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Parkinson's Movement
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HDT / B-1 / Thiamine A Primer For PWPs Who Are Considering Testing It / Email : carapetata@libero.it

As of January / February, 2019 , Dr. Costantini had a stroke related to a scheduled surgery and is currently recuperating and is unavailable for email consults until further notice from his HDT team. Until he returns, we are counting on the experience of the HU Forum members who have or are currently testing HDT to answer any questions not already answered by this page or the HDT FAQ page. For the most recent updates on Dr. Costantini's recovery, Dr. Marco Colangeli has a post going that he has offered to update as information about Dr. Costantini comes available. Here is a link to that post and if you select to "Follow Post" , you will be notified by HU whenever that post is added to.

healthunlocked.com/parkinso...

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Since Dr. Costantini can not currently give dosing suggestions, I have started a page where I have asked members who are currently testing or using HDT to post about their dosing experience and here is a link to that page:

healthunlocked.com/parkinso...

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Although we already have a thiamine FAQs page, there are more questions that are somewhat related to the use of thiamine that are not answered by that reference page so I will attempt to answer some of the common questions here.

1. Who is Dr. Costantini?

A. He is a neurologist in Viterbo, Italy with his own practice and 3,500 + patients that he is treating with thiamine as an adjunctive treatment to their standard PD meds. He has been treating his patients with thiamine for over 5 years now during which time no apparent disease progression has been observed while symptom improvement has been significant for most patients. As far as thiamine, he has been working with it since 2010/2011. Dr. Costantini has over 15 studies related to thiamine on PubMed. He has tried contacting the MJF Foundation in order to see if he could get them to do or fund further research into thiamine to help determine exactly how it works, but they did not respond. In order to get thiamine to a point where it can be considered a mainstream option in PD is one of his main goals.

Based on reports from forum members who have gone to his office, he is nothing short of dedicated to his patients and this thiamine protocol! Based on his willingness to treat PWPs via email for free, he is clearly showing how dedicated he is to his patients and this protocol! From the time I first contacted him about three years ago after reading several of his studies on PubMed, he has been nothing but helpful in offering to treat my friends with PD via email. I think we are lucky to have found him and I feel that he represents the very best of what any of us could ever hope to find in a doctor! He works with at least two other doctors in his practice that I know of, Dr. Trevi and Dr. Colangeli, and like him, they seem very dedicated to the patients and the cause of spreading the word about thiamine.

2. What does the thiamine protocol consist of?

A. In Italy, Dr. Costantini mainly uses high dose (100 mg) intramuscular injections twice a week, but he has a few patients who are not comfortable with the twice weekly injections and for them he uses high oral dosing (1~6 grams) in pill form. Here in the states you can use the IM injections which require a prescription or you can use tablets or capsules which are available over the counter. You can also use pure thiamine powder, but this needs to be added to something sweet to make it palatable as the powder is bitter. Sports drinks, smoothies and yogurt are some common mixers. Do not mix with citrus juices, pineapple juice or take oral dosing with these juices. The upside is that the powder has none of the fillers found in the tablets or capsules. The capsules are easier to swallow than the tablets and this may be very important for some PWPs with swallowing issues, but both come in 500 mgs. Generally, the oral dosing must be done two times everyday. Once before breakfast and once before lunch. Generally evening dosing may cause poor sleep issues while the breakfast and lunch dosing has shown the potential for improved sleep! Thiamine is compatible with most PD meds, but letting Dr. Costantini know what you are taking before you start thiamine is advisable so he can make sure there are no conflicts. You will still need to continue your regular meds as thiamine is not a cure for PD, it helps alleviate many motor and non motor symptoms and so far seems to halt or considerably slow disease progression while having a very good safety profile.

Here is a link to an article discussing the Pharmacokinetics of high-dose oral thiamine hydrochloride in healthy subjects and was provided by forum member GioCas :

Pharmacokinetics of high-dose oral thiamine hydrochloride in healthy subjects:

researchgate.net/publicatio...

3. How long does it take to fine tune the thiamine dose for optimum benefit?

A. Results on this aspect of thiamine therapy vary considerably from patient to patient with 6 months being about the longest and from the start, being the shortest. Usually Dr. Costantini will look at what the patient is currently taking, their height and weight as well as their symptom severity and length of time with the disease in determining a starting dose and see how you do over the first three weeks to three months. If symptoms show improvement in the first week or two but then a worsening of symptoms in the 2 to 4 week range, this indicates that the dose may now be too high at which point the doctor may adjust the dose or suspend thiamine use for several days to a week and then restart at a lower dose. One thing that is becoming more apparent with time is that the PWPs who have stayed in close contact with Dr. Costantini during this initial period of trying to determine the optimum dose seem to do better and get quicker results than those who try and go it on their own with no guidance from Dr. Costantini! Please keep this in mind as it is a very, very important point!

4. Are there known side effects with thiamine?

A. On this forum there have been some side effects reported such as a rash in three people, one of whom was too severe to continue taking B-1, very increased blood pressure in one person who was able to adjust the dose downward and continue HDT, dry mouth in one person, diarrhea in one person on oral dosing, but intramuscular injections do not seem to cause this issue, gastrointestinal discomfort in one person, two people who thought they might have muscle tension, back pain or leg stiffness, but Dr. Costantini said he has only seen these last three effects if the dose is slightly too high for the patient and Dr. Costantini reports one patient who threw up when she took her IM injection. If anyone has had a problem with thiamine, please post it so we can keep this side effect list updated!

Here is a link to a page which Dr. Costantini has written that specifically discusses overdose of HDT in PWPs :

healthunlocked.com/parkinso...

5. What benefit does the thiamine protocol offer to PWPs?

A. Thiamine seems to offer a very broad range of symptom improvements once you have found the optimal dose, but finding that optimal dose may take time as outlined above. For more information on this aspect, I will include a link to a post that is about what the forum members have found in terms of benefits from taking thiamine to give a better idea of reasonable expectations.

6a. How do I contact Dr. Costantini in Italy?

A. You can email him direct at : carapetata@libero.it

Dr. Costantini speaks Italian and it will be most expeditious for you to use this translator (recommended by forum member Xenos and many thanks to Xenos!),

deepl.com/translator

as it seems to be slightly more accurate than Google Translate. It is also advisable to include the English version of what you type in case the translator is not accurate enough as Dr. Costantini has two other doctors at his office, Dr Trevi and Dr. Colangeli, who are fluent in English and will be able to translate any errors that he can not understand. By using the translator above though, it will for the most part, allow Dr. Costantini to understand your email without having to pull his associates from what they are doing and will help to expedite the process. I will include a link below to a post that gives more detail about what information you will need to send to the doctor via email.

6b. How do I use the translator?

A. When you open the Deep L link, type your message in the box on the left. Above the box on the right is the following symbol : " V "

Left click on that symbol and select Italian from the drop down menu. Now whatever you type in the box on the left will show up in the box on the right in Italian. When you have completed typing your message, move your cursor over to the box on the right and highlight the print in this box by moving your cursor to an area in the printed area that is blank and then right click your mouse. A drop down menu will appear and choose "Select all" by left clicking your mouse. This will highlight all of the print in this box on the right. Now right click your mouse again while the cursor is still in the right box and select "Copy" from the drop down menu with a left mouse click. This captures the Italian translation.

Now in another window that has the email you are sending to Dr. Costantini, drop the captured message into the email by starting the email message as you normally would by placing your cursor at the beginning of the email and left clicking it. You will see the typing cursor appear and start blinking. With your mouse cursor near the blinking cursor, right click your mouse and select, "Paste" from the drop down menu. This drops the Italian translation into your email. Sign your name as you normally do.

Now go back and copy the information that you typed in the left box and copy it as you did the right box. You have now captured the English version. Go back to your email and "drop" this English version into the email area below where you typed your name at the end of the Italian translation. Send your email.

If this is too hard to follow, just type a normal message in English and send it to Dr. Costantini and he will have to translate it himself. The purpose of you doing the translation is just to save him time.

7. If I have a problem or question while taking thiamine, what do I do?

A. In such a case, Dr. Costantini advises that you contact him via email and he will answer as soon as possible. Please keep in mind that he is a busy doctor with his regular office patients and he meets with other neurologists in Italy to advise them about thiamine in PD as well as the remote patients that he has from around the world, so he will not always be able to get back to you right away, but he does his best to get back to you. If you ever have a problem where he does not answer your inquiry, send your email again as he has said that all questions regarding thiamine are important and he will try and answer all. He has said that no question is too small to ask him regarding his thiamine protocol.

8. What does the doctor charge for these email consults?

A. Although he charges his regular office patients for their visits, members on this forum who have gone to see him at his office in Italy have said that he is more than competitive, price wise for their office visits. To date he has not charged any forum members for these remote email consults ! He is very dedicated to seeing that word of his thiamine protocol is shared as much as possible! According to several forum members who have gone to his office, he is very thorough and very enthusiastic with them about his protocol as well as very caring. At each visit he does an UPDRS test, a push test with video, a walking test with video, a talking test with video and possibly a writing test with video. These videos are kept on file to be used for comparison at each visit as a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time. I didn't understand this phenomenon, but the videos make it clear that it is easy to forget how bad you were and based on his experience with previous patients, he now requires it because many of his patients who improved, thought they hadn't until he showed them the videos of how they used to be! I personally have seen this effect firsthand so I fully understand the value of the videos in keeping it real.

While Dr. Costantini does not charge for his email consults, he has said he would appreciate it if once you have realized the benefit of thiamine in your particular case that you let your doctor / neurologist / movement disorder specialist know that the thiamine protocol is working for you in order to help spread the word about thiamine and Dr. Costantini's efforts.

9. How long will I have to take thiamine?

I think it is easiest to just look at thiamine as one of your regular meds that you will be taking for the rest of your life because that is what you will be doing. Once you have established your correct dose and are able to perform a good push test and are otherwise stable, it will be possible to take vacations from B-1 for limited periods of time.

10. Are there many people on this forum who are taking thiamine?

As of today (08/11/2018), there are over 50 people on this forum who are currently using or testing thiamine and there are some who have only passingly mentioned that they are taking it, but have not yet posted their results or at least given some type of update, so I do not include them in that count.

It would be greatly appreciated and useful for future users if you start using Dr. Costantini's Thiamine Protocol if you will add your results, either good or bad, to the "Who Is Taking Thiamine" page linked to below.

11. Will Dr. Costantini sell me what I need to do his protocol?

A. No, Dr. Costantini does not sell the thiamine, but it can be purchased at many places on line at reasonable cost as outlined below.

12. While on the B-1 protocol will the disease continue to progress even though my symptoms are well controlled?

A. Dr. Costantini has been treating patients with thiamine for just over 5 1/2 years and in that time his thiamine patients have not shown disease progression regardless of their condition when they started on thiamine! He has patients who have suspended thiamine treatment after 5 years of use and the symptoms gradually return over a period of months, but never to a point that is worse than where they started and as soon as they resume their effective dose, the symptoms go away again! As of now, he only has one patient who has a 5 year old DatScan and a recent DatScan and this patient shows no progression on the second DatScan. As time goes by, he will accrue more patients with long term Datscans, but as of now just the one patient.

If you do contact Dr. Costantini, please let him know you are from the Health Unlocked forum to help him keep track of our members!

Here are some links that will answer many other questions that you may have regarding Dr. Costantini's Thiamine Protocol. This first link is to a page of frequently asked questions (FAQs). This page will answer almost all questions you may have about the use of thiamine / vitamin B-1 and it is important that you read it all for two reasons. One, by reading these questions and answers, it will eliminate you having to ask the same questions over and over again which will allow him more time to answer case specific questions in a more timely manner. Two, it will give you more knowledge about reasonable expectations of this protocol and will help to eliminate frustrations during the initial testing period when you and the doctor are trying to determine your most effective dose. This can be a very trying period as you see your symptoms going up and down from day to day and for some, the frustration can be overwhelming, so this FAQ page is a must read as proper preparation before contacting Dr. Costantini.

healthunlocked.com/parkinso...

The following link takes you to an easy to fill out form to be used for your initial contact with Dr. Costantini and will insure that you give him enough information so that he can reply with an adequate response and in a timely manner :

healthunlocked.com/parkinso...

The following link takes you to a page of forum members who are discussing their results with the B-1 protocol in both intramuscular injection and oral dosing :

healthunlocked.com/parkinso...

The following link takes you to an almost complete listing of 80 symptom relief and benefits that forum members have actually gotten from using the B-1 protocol :

healthunlocked.com/parkinso...

This link takes you to Dr. Costantini's website:

highdosethiamine.org/

The following link takes you to a youtube video that discusses HDT with Dr. Colangeli speaking in english about Dr. Costantini's HDT protocol and a little history on their work as well as other diseases that they have used HDT for :

The following link takes you to Dr. Costanini's YouTube channel where he has many videos showing patients and their reponse to the HDT/ B-1 protocol:

youtube.com/channel/UCwsHIc...

The following link will take you to a website where you can load your self videos that you want to send to Dr. Costantini so he can review how you are doing before and after HDT :

wetransfer.com/

If you would like to donate to the Go Fund Me page for the advancement of high dose thiamine and research this link will take you to that page :

gofundme.com/high-dose-thia...

This next link gives a bit more information about Dr. Costantini :

healthunlocked.com/parkinso...

This next link is about potential synergy between Levodopa /Sinemet / Rytary and Thiamine:

healthunlocked.com/parkinso...

Here are a few links for where to get oral thiamine and what it costs. The product that is used is thiamine hydrochloride. Some manufacturers describe it as Thiamine HCI or Thiamine HCL, but they are the same thing and you will be looking for the 500 mg size :

amazon.com/Solgar-Vitamin-T...

This next link is for 500 mg capsules that are considered easier to swallow than the tablets in the link above:

vitacost.com/vitacost-vitam...

This next link is to a 500 mg Thiamine HCI 120 capsule bottle designed and sold by forum member Erniediaz, on Ebay that uses vegetarian capsules which will be useful for any vegetarians or vegans who do not want to use the gelatin capsules. The other advantage to this particular product is that there are no fillers which could be an important consideration considering that if you are using HDT, you will be using it for life along with whatever else comes in the capsule with it! Also Dr. Costantini suggests using a "filler free" capsule if you are going to try and find out if the fillers are what is causing a rash from HDT use. So this would be a potential option for that purpose.

healthunlocked.com/api/redi...

Here is another link for 500 mg capsules that is more expensive than Vitacost, but may be useful when Vitacost is out of stock :

amazon.com/Thiamine-Hydroch...

Another link to a more expensive supplier that may also be useful as a backup supplier:

amazon.com/Thiamine-Hydroch...

One more option for 500 mg Thiamine HCL capsules :

amazon.com/B-1-Vitamin-500m...

If you are in Canada, this supplier has 500 mg tablets. Thank you to member hercules957 for this supplier:

ca.iherb.com/pr/Solgar-Vita...

The following link / email is to an Italian pharmacy that will compound thiamine hcl capsules with no fillers / excipients and will ship worldwide :

info@farmaciaseveri.com

This link is to a supplier of 100 mg thiamine capsules which may be needed to fine tune your dose in some cases:

swansonvitamins.com/swanson...

These next three links are for bulk thiamine powder:

bulksupplements.com/vitamin...

nutrivitashop.com/vitamin-b...

purebulk.com/vitamin-b1-thi...

This link is the cheapest supplier I have found for bulk powder thiamine :

blackburndistributions.com/...

If you're down under:

au.iherb.com/pr/p/8976

If you're on the other side of the pond:

(To be added and if you have this information, please post it so I can add it to the original post!) )

Art

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added to facebook

parkinson's high dose thiamine hcl

facebook.com/groups/2322600...

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Thank you for the terrific info! Going to contact the Dr. for help with dosing.

My husband has already started the protocol and seeing benefits, such as return of arm swing, increased focus and concentration and less shuffling of feet.

Just amazing! Thanks again for putting all the info in one site...bless you!

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A special thank you to forum member, GioCas, for helping put this post together! 👍👍

Art

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Thank you , Gio!

The contributions by the members here makes this a very good place to get the newest information about most things related to PD and as usual, you say it quite well!

Art

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An excellent post! I am considering thiamine as a treatment option but, was not sure where to start, your post has straightened me up on that matter, thank you so much.

Paul

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Many thanks Art. I have been in touch with Dr Costantini and he has me on 1gm B1 in the morning. It's been just a week and the only thing I've noticed SO far is that I'm more clear headed. I did feel a bit twitchy but Dr C said keep going with the prescribed dose for a while longer then if it hasn't improved take a 3day break and then try 500mgs.

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Thank you for sharing.

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Thank you so much Art (and Roy and GioCas) for your dedication in striving to help us all on HU. I have ordered the powder thiamine HCL for my husband and will post again on the results once he has started the protocol. Thanks again for putting all this information in the one place...so much easier now.

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Jennyjenny2, may I ask where you have ordered the Thiamine HCL powder from? Thank you.

Paul

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Hi Paul

The nutrivitashop.com. It might take a while to get from the US to Australia. From memory, they weren’t shipping to here, but it’s available now. I think it’s the same brand that RoyProp uses??

Good luck with it and all the best.

Jenny

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Hi Jenny,

I will try the nutravitashop.com, maybe they will ship here.

I will find it somehow, thank you.

Paul

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You can also try purebulk.com. I think they ship internationally. They're in the US.

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Thanks for the information, I will check it out.

Paul

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you can get it from england it only takes a week.,mix it with a flavored yogurt,easy to take just mix it up with a few table spoons full of yogurt,i mix it with mannitol as well if you want to try that i get that from the same place as well.regards.

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Thank you.

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Erniediaz1018 just below here has posted the link Paul. All the best 🙂

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yes, thank you to all of them! it takes alot of time to gather this info and put it all together. it is most appreciated!

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Ernie,

I remember you gave me this link before and I have added it into the body of the post. Thank you!

Art

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Thank you for all you do.

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Art, that is a great reference document. It is put together with a guide between links. That takes a lot of work to put together, I know.

Gio, I really enjoy reading your viewpoints. To go along with your comments I believe there are at least two more reasons which make us do what we do.

When we reach out to help others it takes our mind off of ourselves and puts our thoughts on the people we are helping. In many cases that creates a peaceful satisfaction within. An added plus is we were chosen for this disease for a reason. That reason will be different for every one, but we can use our experience to do things which will help others in future.

That thought begs to bring up the 100 year calendar. Many do what they do today because they want to put events on their 100 year calendar. The 100 year calendar is defined as: "What are you doing today that in 100 years will make someone, who probably won't even know your name, have a better life than they would have except for that important action that you did 100 years earlier."

Think how much different this world could be, 100 years from now, as a result of each of our actions promoting the B-1 program.

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Thank you.....for all the time and effort in helping others who have PD so very much appreciated. We are now nearly one month back from our visit to Dr.C and the improvement continues. Wish there was a way we could get his research assisted. My thoughts immediately went to someone like Billy Connolly who is into natural remedies.....he is definitely high profile and maybe even willing to take time to listen about the protocol and pull some strings.

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Very good news. Can you tell me are you doing the intramuscular method or oral? Many thanks

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Hi Sue....started on intramuscular, switched to oral now.

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Kimbo1962,

One thing that can be done is to let your doctors know the reason for your improvement beyond what the meds are doing! I think Dr. Costantini is looking to see if other neurologists may take an interest as they are starting to do in Italy.

Art

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Thankyou for all that information...it helps so many...

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Thanks so much Art for this most informative post. Greatly appreciated!

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Thank you for pulling all this together- much appreciated

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I am very thankful for your well-written and very generous post, easily. I am going to try this protocol after I see my neurologist in September, unless she has some good reason as to why I should not.

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Thanks for the detailed information. I consulted with Dr. Costantini and began B1 treatment yesterday (2 g per day for 2 weeks). PD 5 yrs, tremor dominant, taking Sinemet and Selegiline.

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Art,

Sincerest thanks for your compiling all of the information above regarding the thiamine protocol. I am nearing four weeks using 1g once a day per Dr. C. No noticeable effects yet, but I am imagining it is way too soon. A complicating factor is that while I have never taken c/l in the last six years since diagnosis, my neurologist is encouraging me to at least test it for a month given I have fallen several times in the last couple of months due to retropulsion. Thankfully, I have not been hurt, but the velocity of the movement is scary. My doctor feels that by going on medication It will at least make me faster in responding to it.

I will of course write to Dr. C to let him know when I’m going to start, and since many others in the forum are using it, I’m assuming it will not affect results, just perhaps confound them.

If anyone has significant information about addressing retropulsion please do share it. I recently found an article on balance that gives me hope somewhere it will get addressed with PT, or otherwise, and I will put the link up in my next post.

Natasha

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nldr18,

If you do decide to test the C/L, it is worth noting that park_bear recently posted that he was able to reduce his C/L dosage while on thiamine. I know that Dr. Costantini feels that the combination of C/L and thiamine is quite effective as well as long term durable.

When does Dr. Costantini want you to update him on how you are doing?

Art

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Thanks for the heads up Art re c/l. Since I’ve avoided taking it for so long I’ve got to get up to speed. With regard to Dr. Constantini, he wanted new videos and a report after four weeks, which is on Monday. Will share anything that evolves from his feedback.

Natasha

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👍👍

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Hi easily like so many others I seem to get lost on this site so this post I hope will go to the right area it's great that you've organised this site

Royprop has also taken the initiative to compile all info on Thiamine in one place so we can follow

This is my follow up report on Thiamine I went off the Thiamine because I wrongly attributed it to total loss of movement it was just like my meds had

Stopped working suddenly over just three weeks(see my post on BEWARE of Constipation medicine

Once I realised the truth I resumed my Thiamine routine I take 1 gram in the morning and 1g after lunch within a few days of resuming my constipation was gone my 'off' times are not so long and my 'on 'timesaver longer and stronger

I did have trouble with tremors when I first started but I notice that quite a few of The posts state their tremors increased .In my case it was too high a dose 1g and to3.5g in less than a week

All good now

Cheers Sunnysky

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Sunnysky,

I am so glad to hear that you were able to restart thiamine and starting to see results to the good side again! Please keep us updated on your progress!

Art

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Thanks easilly can u tell me

what heading do I report my

Progress with Thiamine just a new post or to you ? Sorry am not very good with technology am constantly amazed when I get a reply to what I've postedsomethingSunnysky

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Sunnysky,

Ideally, adding it to the post where members are reporting their results with thiamine will be most helpful for other members and will also help to insure that many forum members will see it because every member who is following that post will receive a notification every time some body replies to it!

healthunlocked.com/parkinso...

If you already have a post in that thread from the first time you tried thiamine, you can just "reply to your original post" and that way other members will be able to follow your progress chronologically from the beginning to current and it will keep all of your information together which will also give you a point of reference on how you have done on thiamine over time.

Art

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Thanks so much Art very help full now I've got a great reference point in your post cheers from 'down under'

Sunnysky

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High Dose Thiamin Protocol for this 120#/54.5KG female: 2gm twice per day.

> Current treatment: Selegiline 5mg 1 year, Thiamine HCL 4gm ( Costantini) 3 months, Glutathione 200mg 2 months (Mischley), Lithium, algae derived Omega 3s, CoQ10, Melatonin & Magnesium, plant based diet w Mannitol, exercise, yoga & stress management.

>Over the past 3 months I have experienced improvements: gait, arm swing, can "snap" fingers again, quality sleep. My tremor was already managed by Selegiline.

> I am interested in weaning off of Selegiline to see if Thiamine and/or Glutathione compensates. Studies have shown some placebo effect (Mischley) however, strong evidence via MRI studies w/ 200% increase in brain glutathione after 3 months' trial. I continue Glutathione despite lack of "visible" impact and attribute my recent "movement" improvements to high dose Thiamine therapy (Costantini) and have gradually added nutrition supplements back into my protocol. Dr. C recommended suspension during the 3 month trial period. I am grateful for Dr. C's attentiveness and generosity.

>I exercise everyday and cling tight to research in and out of this tremendous community of HealthUnlocked. sunvox easilly RoyProp jimcaster and others.

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Amy,

Sorry I missed this post, but I think I read it elsewhere so it's good! Very nice report and very good results! Thank you for posting it!

Art

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Started B1 3 weeks ago. Dr C and associates responded quickly to my emails with no fee for services. Results so far are less fatigued and no more constipation in first week. Dr C recommend staying at current dose for 3 weeks and email status at that time

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Lbi1608,

I'm glad you are off to a good start by contacting Dr. Costantini right up front! Results already, I like it!!!

Art

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Hi easilly, I have read through many of the threads about Dr. C's protocol. I would like to consult with him, too. But nowhere could I find whether he wants you to be "on" or "off" your meds when you do the walking-, talking-, and pull-test videos for Dr. C. Do you know?

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It's on the thiamine FAQ page. #48

healthunlocked.com/parkinso...

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Thank you. Much obliged for your speedy answer!

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will my reply be in Italian?

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Yes. Use the Deep L translator link in question and answer #6 above. Include a copy of your English version and your Italian version in your email. I highly recommend that you read the thiamine FAQ page link before contacting Dr. C so you include everything needed in your email.

Art

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i may not understand Italian, regards

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You don't need to understand Italian, just use the Deep L Translator listed in #6 near the top of this page. It will translate your message to Italian as you type.

Art

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we in India Take indian formulations and consult our end Dr. who keep them selves informed of the progress in treating PD world mover. thank you for your elaborate reply. with regards , Billiards

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The BioPower Vit B1 is 500mg, not 100 mg.

Thanks for taking the time to put up this post. We started with 3 pills 2 x a day and 8 pills c/l, (25/250) on the 6th took 5 c/l, on the 7th 6c/l and today we upped the B1 to 4-500mg 2 x a day and will cut the c/l to 4 pills. My hubby has his Delay the Disease exercise class today so that will be a interesting test of the effectiveness of the B1.

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I am Sorry I transposed the 500 mg with the 100 mg below it. I have a question about using the translator. How do I do an email to Dr. C using it. I am not the most fluent person with a computer.

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When you open the Deep L link, type your message in the box on the left. Above the box on the right is the following symbol : " V "

Left click on that symbol and select Italian from the drop down menu. Now whatever you type in the box on the left will show up in the box on the right in Italian. When you have completed typing your message, move your cursor over to the box on the right and highlight the print in this box by moving your cursor to an area in the printed area that is blank and then right click your mouse. A drop down menu will appear and choose "Select all" by left clicking your mouse. This will highlight all of the print in this box on the right. Now right click your mouse again while the cursor is still in the right box and select "Copy" from the drop down menu with a left mouse click. This captures the Italian translation.

Now in another window that has the email you are sending to Dr. Costantini, drop the captured message into the email by starting the email message as you normally would by placing your cursor at the beginning of the email and left clicking it. You will see the typing cursor appear and start blinking. With your mouse cursor near the blinking cursor, right click your mouse and select, "Paste" from the drop down menu. This drops the Italian translation into your email. Sign your name as you normally do.

Now go back and copy the information that you typed in the left box and copy it as you did the right box. You have now captured the English version. Go back to your email and "drop" this English version into the email area below where you typed your name at the end of the Italian translation. Send your email.

If this is too hard to follow, just type a normal message in English and send it to Dr. Costantini and he will have to translate it himself. The purpose of you doing the translation is just to save him time.

Art

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I printed your directions off and I will try it first. Must keep the brain learning new things. Thank-you for taking the time to type the directions out.

We are on day 4 and it seems to be helping. My husband does not know he is taking the B1, so it will be interesting to see how the videos look.

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How does he not know he is taking B-1? I guess you definitely better keep him on capsules, because the powder will be a dead giveaway!

I'm glad that you think there is some benefit already, because it makes it easier to stick with it. For those that do not show improvements for months, not so easy to stick with it though!

I added those directions on using the Deep L translator as Q&A 6b above in case you lose the printout.

Art

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yeah, how does she sneak in those big capsules? lol.....

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Since Vitacost is out of stock on thiamine at least until Halloween, I added two more links to the original post at the links section of the original post. Although these two are more expensive than Vitacost, they may be worth considering as backup suppliers in case Vitacosts runs out again!

Art

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this is not the first time they were out of stock. it must mean that alot of people are doing the high dose thiamine.

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Jujulini,

These are the ones I use in Italy, take a look at the number of packages sold. No other item sold so much.I think

homoempatia.eu/product/vita...

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The thing that HU members may not be considering is that Dr. Costantini also prescribes B-1 for many other health conditions and I'm sure these also are adding to the current high demand for thiamine hcl.

Recently, a California doctor posted on this forum that he is now testing thiamine in some of his patients for CFS and Fibromyalgia after having discussions with Dr. Costantini on how to dose and use B-1, so clearly the demand is increasing!

I'm sure we are not the only forum discussing the use of high dose thiamine and especially for other health issues. We only discuss its use in PD, but there are so many other potential uses as described by Dr. Costantini and others!

Dr. Costantini recently asked me for a copy of the B-1 FAQ page so he could give it out to others who are requesting it, so I can only see demand going up from this point forward!

Art

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For your information

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Gio sent me this article about HDT with commentary from Dr. Costantini that has useful information in it. Some has already been covered on this forum, some has not. I translated the article to English as it was written in Italian.

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According to approximate unofficial estimates, in Italy there are almost 500,000 people affected by the degenerative disease of Parkinson's disease, a disease that affects not only the elderly, but also young people of 30 to 40 years of age who are diagnosed. There are several Italian health centers for the treatment of this disease that affects the quality of life of the patient and his family.

For several years Dr. Antonio Costantini, neurologist of Viterbo, cures Parkinson's disease through the administration of high doses of vitamin B1. Alone or associated with Levodopa with often surprising results. The neurologist, the first in Italy, has in fact treated hundreds of patients affected by this degenerative disease that has restored the hope of recovery to many patients. It is interesting to know the results obtained on patients treated by the neurologist from Viterbo after five years of treatment with vitamin B1.

Q: Dr Costantini, how many patients are you treating today with Parkinson's disease?

A: We treat 4000 patients directly in the practice, plus 500 more patients from all over the world. We also had the opportunity to visit about 10 patients from the United States, England, Malta, Thailand, France and Bulgaria.

Q: What are the first symptoms of this neurodegenerative disease?

A: The first symptoms are difficult to decipher because the disease begins long before the motor symptoms are clearly evident; in fact, the first signs may be loss of smell, sleep disorders, constipation and bladder disorders, reduction of facial expression, persistent neck pain, slow and tight writing, changes in tone of voice and speech, reduction of arm oscillations during walking, depression, fatigue, a nuanced slowdown in motor activities. After the onset of these "hidden" symptoms begins the phase in which the classical motor symptomatology is clearly evident and very often there is also tremor at rest.

Q: Dr. Costantini, for over 5 years you have been prescribing a therapy based on Vitamin B1; tell us briefly what are the results obtained so far.

A: Normally, if the disease is not in a very advanced state, we almost always obtain a complete or almost complete regression of symptoms, and in any case always an improvement of 40% of symptoms even in the most advanced and serious cases. It is difficult that vitamin B1 alone, even in the early stages of the disease, can, on its own, regress all the motor symptoms of the disease. We have only three patients with this result. Despite the fact that the vitamin restores the recoverable and stops the progression of the disease, the motor centers affected, although now made up of healthy cells, are very small compared to when the subjects were healthy (about 60-70%) and can not produce all the amount of dopamine necessary for normal functioning of the nuclei of the base. The complete, or almost complete absence of motor symptoms is obtained if the patient already takes levodopa or if this is added to the therapy with vitamin B1 after its introduction into therapy. Levodopa is a symptomatic drug and is not able to heal cells or stop the progression of the disease, but works synergistically with vitamin B1.

Q: After five years of administering high doses of Vitamin B1, can you say, from a medical point of view, that the benefits for patients are now well established?

A: Yes, they have all been consolidated for many years now. There are now many patients that we have been treating for 4-5 years. The patients are stable, without any sign of disease progression (without changes in the dosages of drugs taken), in a good state of health as you can see in the videos posted in our blogs and in the Youtube of Ultimaedizione.eu ( CLICK HERE ). This means that the high doses of thiamine heal the healing cells of the affected functional systems and, carried on over time, keep them healthy thus stopping the progression of the disease. In other words, the data in our possession undoubtedly show that high-dose vitamin B1 has a restorative and neuroprotective effect on this disease. All the research in the world is aimed at finding a cure with these characteristics, but no one has realized that a cure highly effective and with these characteristics is already available from 2013.

We are also starting to have the first neuroradiological instrumental data to confirm the clinical data. A patient with Parkinson's disease, diagnosed with SPECT with receptor tracer (DATSCAN) in 2013, and since then only on therapy with vitamin B1, has this year repeated this examination which, in simple terms, is related to the number of cells survived the disease. The test was similar to that of 2013, indicating that in five years there has been no loss of neurons. In Parkinson's disease not treated with vitamin B1 there is an average loss of 3% each year. Therefore, the disease has not had any regression as far as the clinical and instrumental aspect is concerned.

Q: Are there any relapses after years of treatment?

A: None. Clearly, the patient must continue the therapy. Even with interruptions, for example, of one week per month, one whole month or two months.

It's not like the suspension of the levodopa. Let's assume that the patient suspends the levodopa: immediately the patient is sick. If, on the other hand, vitamin B1 is suspended for a certain period of time, this does not have a negative effect on the patient. Therefore, if the patient suspends the therapy of Vitamin B1 for two to three months he has no worsening of his condition. This is because the primary cause of the disease takes a long time to damage the restored cells to the extent that it restores the previous state of disease.

Q: In which national and international context have you presented the results obtained with the treatment through the administration of vitamin B1?

A: We presented our results at the eighth international conference on vitamin B1 (also called thiamine) in Liège in 2014, with great approval of the great colleagues present, mostly scholars of molecular biology. Following the Cagliari conference of the Italian Neurological Society in 2015 and we published 4 articles in medical journals worldwide. These data have long been available both on ultimaedizione.eu and on the website highdosethiamine.org.

Q: What is the reaction of official medicine to its treatment?

A: Generally speaking, I am completely disinterested; I don't know the reasons for this. Surely the industry is not interested in hindering this new therapy because it has nothing to offer as an alternative to this treatment. Of course, if you see images of Parkinson's disease on the internet you will never see images of patients treated before and after any therapy. Almost no one has ever published them, especially after long periods of observation because the therapies contained in the world guidelines can not stop the progression of the disease and the subsequent worsening could not be disguised. If you view our patient films before and after treatment you will see the improvements in the patients after treatment and the persistence after years of the improvements achieved from the beginning. The complete regression of symptoms has never been described by anyone before us, it was considered an impossible fact.

The other aspect is that vitamin B1 is even more effective in counteracting and regressing the non-motor symptoms of the disease. Non-motor symptoms (cognitive impairment, fatigue, depression, olfactory disorders, intestinal disorders, disorders of sexual potency) are considered incurable by official medicine. With vitamin B1, on the other hand, patients have a complete or almost complete improvement in these symptoms, which are usually lighter than motor symptoms. Therefore, they can return to normal even without the help of anything else.

For example, levodopa is classically known to be the best drug for Parkinson's disease, but only for motor symptoms. On non-motor symptoms it is completely ineffective as all dopamino-agonist drugs.

Q: Does the administration of vitamin B1 to patients ultimately give hope of healing to the many, too many Parkinson's disease patients?

A: I would like to clarify the concept of "healing". We would heal Parkinson's disease if we could eliminate, suppress forever the primary cause of the disease (which we do not know). This is not currently possible. No one has available an etiological therapy, that is, one that is able to eliminate the primary cause of the disease. High-dose thiamine therapy, however, appears to be a highly effective therapy on a pathogenetic basis by blocking all the damage that primary cause can produce. The patient becomes a healthy carrier of the disease, a reality very similar to healing.

Given the growing number of people suffering from Parkinson's disease, it would be desirable to bring together medical, pharmaceutical and hospital forces to find out the main causes of the disease and to fight together, the official scientific pharmacology and new findings, to eradicate a disease that is on the increase worldwide.

Giuseppe Careri

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Great, thanks for this article..!!

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Art, Thank you sooo much for this information. I have been reading about B-1 but not much informaton. I think it was wonderful of you to write all of this.

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boundless,

I'm glad you found this page useful. Feedback is always helpful! Please keep us updated if you decide to move forward with HDT!

Art

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Is this one ok also Vitamin B1HCI Thiamin

by Solgar?

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That's what I'm taking.

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Thank you. Did you contact the doctor or just started to use B1? I am in a very bad shape,but diagnosed just few month ago. Taking Amantadine and levadopa.... I hope it is no interaction with B1.

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I started by myself and later contacted the doctor. I become aware of symptoms in January 2016 and I was diagnosed in August 2016. I take 1g or 2g /day B1 and just started 100/25 c/l two times a day and I say I'm ok for now. B1 helped with balance and energy.

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Thank you very much for your reply. I got lost with PD.

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I think everyone gets lost at the beginning but if you accept it and try to handle it you'll feel better. Keep the stress down!

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Thank you.

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Compatible

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Thank you.

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Off topic -

I came across this report when looking into thiamine; warning - it's rather depressing.

The report concerns widespread thiamine deficiency in wildlife:

eurekalert.org/pub_releases...

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Wow! So much information written in an orderly fashion. Lots of homework for me. Very good of you to take the time to post.

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Just a quick note to mention that our own forum member, Erniediaz, has developed a Thiamine HCI 500 mg capsule using no fillers and vegetarian capsules just for people who would prefer to not take in all of the gelatin and fillers present in most thiamine capsules. Considering that HDT is a life long commitment, you can see how the amount of gelatin and fillers consumed over time will be significant. Previously our only source was the pharmacy in Italy that offered them, but shipping was expensive and long. Now vegans and vegetarians have an HDT option that is easy to get. This also gives us one more option to the bitter thiamine bulk powder with no bitterness and no measuring! Another benefit to this product is that for people who are testing HDT and have developed a rash, Dr C has suggested using a "filler free" capsule of Thiamine to make sure that it is not the fillers that are causing the rash. This new product makes that easy to do!

I added a link to Ernie's product which you can find by just scrolling this page upward to the section that has links to various HDT products. His is right below the link to Vitacost.

Thank you for giving us another healthful option, Ernie!

Art

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This is really good work! Well organized, clear writing. Thank you, Art.

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I just wanted to let the forum members know that I have added a YouTube video about HDT to the links list in this post, higher up on this page near the lower portion of the original post. I had never seen this video before, but some of you may have. I found it pretty interesting because it filled in some "blanks" that I had about HDT and they briefly discuss some of the other diseases that they use HDT for. In any case, I am mentioning it because it has information that I had not heard before and should be useful for people who would like a little back ground history on how Dr. Costantini started using HDT in the specific way that he does. The video is in English and it is Dr. Marco Colangeli who is speaking in the video. The link can be found by scrolling upward to the links section, but I am including it here also to make it easy to access right now. You can hear Dr. Costantini commenting every now and again in Italian. I hope you find it useful! Don't think that just because you have seen the pictures on the front of this video before that you have aleady seen it because the pictures are old, but the video is relatively new! If you watch it, Dr Colangeli discusses the HU Forum and how we have had very good benefits in multiple forum members! Since they mentioned the HU Forum in the video, I added a message and an invite for people who want to know more about HDT from people who are actually using or testing HDT here on HU.

Art

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Do many of those focused on HDT, also take sinemet or some other version of carbidopa/Levodopa?

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Yes, absolutely!

Just remember that many HDT users were already on standard PD meds well before HDT was known about.

There are also members who are very newly diagnosed and found HDT early on. In the best case scenario, some people who start early enough can get by on just HDT while other members have been able to reduce their Sinemet/ Rytary or other Levodopa products with the addition of HDT.

Others prefer what they consider a more natural approach by using Mucuna, an herbal form of Levodopa in conjunction with HDT.

Other members are using HDT with other supplements, but no meds.

It seems like we do it all on this forum!

Art

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Trying to purchase Thiamine HCL. Seems the answer to my prayers.

Amazon has 'bulk supplement' of powdered form, 100g.

I realise I don't understand about dosage. I wonder what 100g would equate to, and what dosage of the powdered form I'd need to take, which would equate to 500mg tablet.

I will keep looking.

Thanks for all of this amazing information. It's helping to restore hope after a 2 month battering with Sinemet.

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Yoginipoet,

Just a suggestion for initial testing of HDT is to use the capsules or pills initially, until you find your correct dose. The reason for this is twofold, one, the pills and capsules are accurately already measured and two it is more convenient and can be taken with you wherever you go in a pocket or purse. Once you have established a correct dose, then you can switch to the pure powder form. Keep in mind also that the powder is bitter and may need to be mixed with something sweeter like yogurt or a sports drink in order to be palatable for some. Also the powder needs to be measured accurately each time. If you are merely trying to avoid the fillers inherent in many pills and capsules, there is a vegetarian / vegan option in the links section of the original post above, just scroll up and it is the one listed just below the Vitacost link. It is 100 capsules of 500 mg Thiamine HCI with no fillers at all and a vegetable based capsule. Generally speaking, members have bought the 500 mg pills and capsules and some have a hard time swallowing the pills as they are rather large especially for PWPs who may have swallowing issues. Members have reported just chewing the pills up to avoid the swallowing issues. The capsules are generally smaller than the pills. Further down in the links section of the original post, you will also find links to bulk thiamine powder.

Art

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Thank you.

The link to Vitacost didn't work when I tried it before.

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