With Dr. Costantini unavailable for consults due to his current health, the HU Forum and others have a definite need for HDT dosing information that other members can use as a guideline. I am asking all members who are currently testing or using HDT to please post any dosing information that you feel could possibly be of use to a person who is thinking of testing HDT. Your practical day to day experience with dosing will be invaluable for all forum members both present and future and will add to our total knowledge base on HDT!!! Things like your weight, dosing schedule, increases in dosing, decreases in dosing, noticed overdose effects, dosing and benefits, dosing time, dosing spacing, how you are dosing, with food or without food etc. are the kind of information that might be useful, but you, as a tester or user have the actual practical experience that can be very useful for others who are searching for their proper and optimum dose. Even if you are using injections or bulk powder, your information is just as invaluable to our members!
I would like this page to be for the sole purpose of discussing HDT dosing, so please post any advice or tips on HDT dosing on this page so dosing information can be shared with all members!
Thank you to all of you for your contributions to this page!
To start this off on a good positive note, the following is a copy of Dr. Costantini's information on dosing that covers a lot of ground and is quite helpful as regards HDT dosing:
The therapy with thiamine if administrated at the right doses improves fatigue and related disorders in inflammatory-autoimmune diseases and both motor and non-motor symptoms of a number of neuro-degenerative diseases.
The following example includes a detailed explanation of the therapy devised by Dr. Costantini’s group for Parkinson’s Disease (PD). Since often the non-motor symptoms are less intense than the motor ones, the former may regress completely even if the high dose thiamine is the only therapy the patients takes. To date, no therapy has demonstrated to be effective against the non-motor symptoms. As for motor symptoms, the high dose thiamine alone is not capable of leading to the complete regressions of these unless the disease has had a very recent onset (rare cases we observed). This may be due to the fact that, even though thiamine restores survived cells and seems to stop the development of the disease, the cells left untouched by the aggression of the disease are in limited number and are not capable to substitute all functional systems that depend upon a healthy substantia nigra. We observed that the right dose of thiamine can lead to an improvement of the symptoms between 50 and 80-90%, but in order to push towards the complete regression of the symptoms the correct dose of l-dopa should be coupled to power the dopaminergic motor circuits. L-dopa then shall no longer lead to dyskinesia if used together with the high dose thiamine. The treatment is based upon the hypothesis that the disease leads to the death of neurons through its interaction with the intracellular metabolism of thiamine. This action can be blocked by the administration of high doses of thiamine. The neurons, once no longer burdened by the primary cause of the disease, restart their activity and this leads to the improvement of most symptoms. Continuing the therapy, the neurons might stay healthy regardless of the existence of PD. Thus, in addition to a rapid improvement of the symptoms we observe also a freezing of the evolution of the disease. However, the primary cause of the disease is not directly interested by the therapy. High dose thiamine does not eliminate the primary cause of the disease but blocks all damages inflicted by the disease. Therefore, the high dose thiamine is a pathogenetic therapy. The therapy thus limits the degeneration of the nervous system which continues to work efficiently when freed from the limitations posed by the disease. When the high dose thiamine is suspended after a cycle of treatments of three months, the beneficial effects do not cease right away but start to diminish within the next two months. We believe that this happens because the mechanisms of action of the disease have a certain buffer effect which in turn requires a couple of months before getting back to the status of the symptoms before the use of high dose thiamine.
The correct dose varies on the basis of:
Duration of the disease (the longer is the duration of the disease, the higher will be in general the doses;
Severity of the symptoms and rate of progression of the disease;
Weight and physical characteristics of the patient;
Sensitivity/responsiveness to the treatment.
In order to determine the right dose we usually stick to the following protocol:
First of all we learned that if the initial dose of thiamine is too high for the patient, this will experience a worsening of the symptoms after a few days characterized by an initial improvement. In this case we invite the patient to halt the treatment with high dose thiamine for a week or so, and when the worsening regresses we restart the therapy with lower doses, often half the original dose. In our experience the correct dose should not lead to collateral effects, but only to benefits for the patient. This includes an improvement of UPDRS symptoms by at least 50%, and normalize the pull test. The improvement of the results of the pull test are only observed with the treatment with high dose thiamine. A normal person, received the pull back stays either steady or takes one single step back to avoid falling.
However, if a patient with PD is pulled strongly backwards him/her will take two or three steps before recovering, or requires support to avoid falling back. This symptom is improved only with the use of the high dose thiamine protocol as we have never observed its improvement with other treatments. Usually, we obtain the normalization of the performance of the pull test within a month from the beginning of the therapy, in rare cases it is necessary to adjust the dosage and for this reason it may take up to three months in total to appreciate the improvements of the pull test.
The correct high dose thiamine therapy reduces greatly the symptoms. What remains (particularly the tremor is especially tough and resists to most of the therapies) is responds readily to the use of l-dopa.
In case of recent onset of the disease in patients whose weight is comprise between 50 to 65 kg (110 – 145 lbs), we begin the therapy with two grams of thiamine per day, before and after lunch. In case the patient weighs more, the dose can be three grams per day, always divided into two administrations. Oral thiamine should not be taken with juices or any sour beverage, water only. The equivalent Intramuscular administration of thiamine would be:
For 2 grams/day orally à 1 x 100mg injectable solution per week;
For 3 grams/day orally à 2 x 75mg injectable solution per week;
For 4 grams/day orally à 2 x 100 mg injectable solution per week.
In order to obtain the same effects of the intramuscular dose, the oral dosage should be around 140 times higher. For instance, 100 mg injected once a week have the same therapeutic effect that 2 grams per day x 7 days (total 14,000 mg, thus 140 times 100 mg) have if administrated orally.
Before starting the therapy with thiamine it is necessary that the patient records him/herself. In the video the facial mimic, the speaking, the walking, and possibly a pull test should all be performed and recorded. These items should be repeated periodically to notice changes in the performances.
Even though in our experience thiamine is well effective alone, it is possible to add other group B vitamins, including folic acid. However, we do not begin the therapy with high dose thiamine in addition to multivitamin compounds, especially if these contain vitamin B6. This because vitamin B6 is a facilitator of the peripheral decarboxylase and in PwP may interfere with the amount of L-dopa that reaches the brain and thus worsen the symptoms. Usually the L-dopa compounds contain inhibitors of such action, however since this interference may occur even in presence of inhibitors, we would not be able to detect whether the effectiveness of the high dose thiamine is maximized or if it could be further fostered. It could also be useful to take a tablet of magnesium longlife 375 twice a week.
Some supplements on the market contain high shares of magnesium or other elements. These should be avoided because the patients who do the high dose thiamine do not benefit from the relatively high doses of the other supplements. For instance, some thiamine tablets contain 500 mg of thiamine HCL and 100 mg of magnesium. Given the high number of tablets that a patient is supposed to take throughout the day and the week, and lifelong for that matter, the risk of hyper concentration of magnesium is high.
When we start the treatment with high dose thiamine we usually do not suspend nor modify the original drugs regime that the patient is on since we have learned from our clinical experience that thiamine improves the efficacy of traditional PD medicines.
Thiamine is highly safe for the patient and it can be taken together with whatever other supplement or drug. When it is administrated through intramuscular injections it could lead to allergic reactions (we observed 4 cases in 2,500+). Mainly there are dermatological rushes and allergic phenomena.
It is not suggested to use IM high dose thiamine for patients under treatment with anticoagulants (e.g. Coumadin; Sintrom) since the injection may cause a hematoma in the location of the shot. The several thousands of patients we follow have never reported major collateral effects or problems with the therapy, neither for the clinical nor concerning the blood tests and the monitoring of their general vital functions we have observed unfavorable conditions.
It is clear though that the best therapeutic results with the high dose thiamine are obtained by expert practitioners and after an accurate initial clinical evaluation of the status of the patient, the video recordings etc. We have several patients who started the therapy in 2012-2013 and that nowadays are still in good overall physical and mental conditions, without showing evident signs of progression of the disease.
Summarizing, out of the 2,500+ patients we have treated we found that:
Relevant improvement of motor and non-motor symptoms;
The disease does not seem to progress;
Absence of insurgence of complications due to long-term use of L-dopa;
No collateral effects or alterations of the results of blood tests.
Yet, another good idea. If only the kids who write code for the site would pick up on your idea of a "read-only" page -- because 2 weeks from now, the day after everyone has shared their experience, someone will ask about dosing. You know, you could use your profile as a read-only page?
Initially, it was thought that 4 grams per day was an average starting dose for oral HDT, but as time has passed, we have learned that HDT is very individual specific when it comes to dosing. Some members started with 4 grams total per day in two divided doses and it worked perfectly for them and turned out to be their optimum dose. Other members who tried the 4 grams/day soon found that while they noticed an initial improvement in symptoms the first week or two, they soon found that their symptoms were not only worsening, but actually worse than when they started HDT. This was the clear sign of overdosing on B-1. I will note here that in all of the years of experience that Dr. C has been working with thousands of patients with HDT, any worsening of symptoms has been temporary and improves once the dose is optimized for the individual. I mention this because it can frighten anyone to think that their PD is worsening rapidly and they fear that it may be permanent! In all of his experience. it is not!
Later it was learned that Italians, seem to tolerate higher levels of B-1 without sign of overdose while other areas of the world seem to be more sensitive to B-1 and can show over dose symptoms at even lower dosing. Dr. C was quick to realize this once he started his email consults from around the world. Once he was aware of the discrepancy, he started suggesting that his email patients who were encountering this overdose situation to stop HDT for a week and cut their daily dose in half when they restarted HDT. It is very useful during this "week off" from HDT to keep notes on how your body reacts each day that you are off as this will be very useful for you to go back to when needed to help find your optimum dose.
So Dr. C would have you stop for 3 days to a week and then halve your dose and then report back to him in a couple of weeks and update him on how you are doing on the new dose. If you are showing no signs of overdose, then he might try increasing your dose a bit more, but if you are once again showing signs of overdose in terms of a worsening of symptoms, he may suggest another week off and take daily notes and then starting at a halved dose again. You can kind of get an idea of how he tries to work out the dosing by this pattern. Yes, it is a lot of trial and error, but if you are a responder, it is a nuisance worth dealing with.
What we have learned on this forum is that the optimum effective dose can be anywhere from under 100 mg per day total to 4 grams per day and as you can see, that is a huge spread!
As a general guide, it seems that the larger the person and/or if they are Italian, the larger the dose, while a non Italian smaller person may require a relatively low dose of HDT in order to achieve benefit, Some people have found their optimum dose in the 100~200 mg / day dose range. Severe symptoms or very long disease status may require higher dosing also.
You may think that adjusting the dose by a 100 or 200 mg can not possibly have an effect, but it does.
To give a real life example of how a relatively small dosage adjustment can make a huge difference, member Kia17 had been very stable on HDT for about a year and a half with very good symptom control and an overall good state on HDT. One day he started noticing that he was getting a very noticeable worsening of symptoms that seemed to be increasing and he mentioned it to me. I thought maybe his dose was barely adequate and he had little to no B-1 reserve capacity, but when he contacted Dr. C to let him know about the worsening of symptoms, Dr C said he thought his dose might be a little high! Based on that, Dr. C recommended that Kia pick one day of the week that would be easy to for him to remember. After having Kia stop his dose for a week or so, he told him to go back on the same HDT dose, but this time, don't take his daily dose on the one day of the week of his choosing. As soon as Kia got back to his old dosage with just one day off per week, he was at least back to where he used to be prior to the worsening of symptoms. Taking one day off per week when divided by seven days is a very small dosage adjustment, yet it was like night and day in terms of the results it got!
Another important point about dosing that I would like to mention is that it can take a significant amount of time to find your correct dose, but here is a clue that may be useful in speeding up that process. Let's say you weigh 165 pounds and you decide that you are going to start at 3 grams a day total with 1,500 mg before breakfast and 1,500 mg before lunch. You start out fine and no problems and in fact after a day or two you notice something different like lowered anxiety or constipation that seems to be easing up, so all is good, but then at day 5, you notice you are getting a worsening of freezing or foot drag. So although you started to see improvement it was short lived and this is a first indication that the dose may be too high. """""""""The sooner a worsening of symptoms appear, the lower the optimal dose is likely to be."""""" The correct dose should manifest as only symptom improvements.
Lastly, and I have mentioned this frequently, some members have reported not one single improvement for three months or more and then out of nowhere, symptoms start to slowly improve. The very lucky ones have reported benefits starting on the very first day of oral dosing! So as you can see, just because you do not see benefit right away, it does not necessarily mean you are not a responder to HDT, it may just mean that you are a slow responder because the thiamine needs more time to affect specific repairs that will eventually manifest as symptom improvements!
Here is a link to a post where Dr. C specifically discusses overdosing on HDT that may also be useful:
After like 3 month of experimenting HDT with no success except the three first days - that were amazing - I contacted Dr C. Then began a series of dose adjustment under his supervision with 3 videos taken each time (talking, walking, pulling test).
I only use IM Thiamine HCL.
- I am 70 kg for 1,71 m ;
- Caucasian ethnicity ;
- 66 y.o. ;
- diagnosed in 2016 (3 years ago) ;
- UPDRS is under 30, more likely 22 ;
- Dr C. upped my L-Dopa from 3 x 100 mg to 3 x 150 mg per day ;
- Last time, he suggested 75mg IM once a week, 3 weeks per month.
I stayed with that dose since Dr C. had this accident.
The first dose was incredible, he had 2 (500mg) solgar's HDT B1 when he woke up,
with 1.5 tablets sinemet (100/25) and 4 capsules now brand 15% mucuna. His on time was 5 hours (instead of the usual 2.5-3).
He took 2 HDT pills before lunch, but the effects weren't quite the same.
We continued this for 3 days, taking 2grams a day, but for those 3 days, he was experiencing black, tarry stools, and after a big full meal, it was hard for him to breath.
We finally attributed it to the HDT pills. We stopped them completely and his stools went back to normal and his breathing was back to normal.
We will take a week long break, and re-start with the 100mg sublingual HDT and work our way up from there.
I think in some cases when there are digestive issues, people have opted for the IM injections, but for me, my preference would be for any oral form as I find injections bothersome.
Did your dad get any benefit from the B-1 that he took? If so, what benefits did he notice? For oral dosing, same day response is more the exception that the rule. Some people take many months to see results, but a few have reported benefit from the first dose.
We only did it for 3 days because the tarry stools and trouble breathing post eating were worrisome, but I did notice a big difference in his speech... Most clarity and volume I've heard in a while, as if he wasnt carrying 12 years of PD. I think his on times were a bit longer too.
Ok, HDT B1 definitely gives my dad breathing problems... he would take it in the morning then by the evening he has major shortness of breath. We did a few tests, of taking it, then not, and seeing what happens, and know that the B1 gives him very scary breathing problems. I'm a bit disheartened, but I am now thinking perhaps its because he currently has GERD and an inflamed esophagus? I know they are not part of the respiratory system but these issues cause him to have swallowing issues (unrelated to parkinsons, as identified by his speech therapist and others). I guess we will wait until his esophagus has healed and the GERD is gone to try again. If anyone has any thoughts or insight into this, so welcomed and appreciated. thanks
You might have to take care of the digestion issue first.
In Italy, Dr Costantini mainly used intramuscular injections on the majority of his patients, but only a few here on the forum have gone that route. The other thing is that he said it could be taken with food or without food. It may just be that your dad is not able to take it because he seems to react badly in a way that I have never heard reported before and anything that affects your breathing in a negative way, would not be good for your dad or anyone else.
Yea that makes sense... Thanks for reminding us about the injections. Once this pandemic is over, might be the route to go for my dad. There is a naturopath he has seen who can do them! I wish i knew why he is reacting to the pills this scary way. Thanks Art
I'm going to get started on this therapy I was fortunate to converse with DR. C. before his tragedy. He recommended that I start on 1 Gram per day, I'm 71, 77 kilos, diagnosed in June of 2018. Passed health issues include CLL in 2004 with no relapse and prostate cancer in June of 2016. Prostatectomy cured it.
This is another cut and paste of a post by forum member Stevenmast on 3/10/2019 regarding his dosing after recently starting on HDT to good effect.
I was going up in 1 gram increments when I went from 3000 to 4000 I got a little sluggish and felt off. So I shut down five days. I'm now back on at 3000 feeling good. I am trying to lose weight that I put on over the winter so I'm going to wait until I got the last 8 pounds off before I increase. I bought 100 mg capsules so this time I go up 200 100 each dose and hopefully find the magic number.
I started at 2 grams twice a day but had to cut back due to excessive colon peristalsis and interference with my sleep. I am down to 500 mg twice a day which seems to be adequate for me. Less than that is not adequate.
Wow I have the same issues! I have always had trouble sleeping but this colon thing i have never experienced before!!! I cant move my bowels at ALL! I have been trying to lose weight so i assumed it was what i was eating or not eating so i recently(yesterday) made changes to my diet. I also made in retrospect a dumb mistake and shaved an 1/8 off my normal 3/8's dose to see if i can get the same 4 hours relief. Well it worked for my morning dose but not my afternoon dose. Now im shaking while typing and i shouldn't be at this time. I now realize i created too many variables making it hard for me to accurately assess if i need to go down more? I think i know the answer...what do you think? Thanks -Steven
I did have Parkinson's constipation before high-dose thiamine. But with high-dose thiamine I tend to have more colon peristalsis than I need, so that would be the opposite of your problem. One additional remedy that I also find essential is docusate sodium, also known as Colace. It is not a stimulative laxative, it merely adds moisture. In my case Parkinson's dries out the G.I. tract from one and to the other, so this remedies that problem. Also take a bit of wheat bran in the morning to add bulk
Thank You! Perhaps Im a little slow no pun intended but i failed to mention my ENT had me taking a water pill for the last 4 months to bring down the swelling of my inner ear because i was getting severe vertigo attacks. It worked but yesterday i stopped taking it sensing it was giving me side effects. I like you have always had Parkinson's constipation but i think the water pill zapped any moisture i had left! Thanks for your suggestions i will certainly give them a try! -Steven
easily;!Thanks for picking up the ball and running with it.
I have a PD tremor and shuffle. I was hoping the B1 would resolve it. I started (w/o advice from Dr. C) with 2grams B1 2X a day. I didn’t see any improvement, maybe worse. I’ve since lowered the dose to 1 G twice a day. Still shaking. I should mention that during this same period I switched from C/L to Mucuna Pruriens. (2gr. 2xday)
One day my tremor was bad so I took one 25/190 C/L and the tremor subsided.
I will run with B1 x 2 gr. And MP @ 2grx2 day. for a couple days to get a final verdict.
My husband had 2 gs x 2 doses, at beast and lunch time as directed by dr c. He weighs 85 mgs and 1.80 tall. Took 3 montgs to see change.
This is a cut and paste by JAS9 on 3/10/2019 regarding dosing for a person who said they noticed a worsening of tremors at a specific dose of HDT after about two weeks of testing.
Worsening tremors or trembling can definitely be a sign of taking too much B1. When that happened to me, Dr C had me quit for 3 days and start again with half the dose.
Hi. My husband started at 500 mg then increased to 1 g. He felt even more fatigued and more jerking at night when he slept. Stopped for 5 days and just started 500 mg B1 + 2 capsules of Magnesium from Natural Slacks at bedtime. Slept through from 0230-0700. First time in years. Usually wakes up every 2 1/2 hours to pee. He is 1.74 m and weighs 73 kg. He also takes 1 tsp of mannitol at breakfast . May increase his B1 gradually but I know at 1 g it’s too much for him
We have since increased it to 100 mg tues and fri and the other days 50 mg. That gives a total of 450 mg a week. At 100 mg 5 days a week he was having active dreams
He is taking 100 mg of B1 HCl daily. Had to increase because after topping up his deficiency and reducing to too low a dose felt that dose was insufficient
Age 49, female, British, diagnosed with Parkinsons in July 2016. Currently have mild symptoms in general. Non motor symptoms such as mood are more problematic than the motor ones. I have stiffness rather than tremor, with loss of small motor skills in the left hand and small gait abnormality in the left leg. Not on medication yet but take 7g mannitol per day (for a year now) which helped immediately and extensively with non motor symptoms.
I am fit and weigh 120lb.
Started HDT in consultation with Dr C in September 2019
1.Started on 1g morning, 1g lunch
After 7 days felt generally unwell and with tremor in left upper arm (came on gradually over the week but noticeable after a couple of days)
2.Dr C recommended carrying on at same dose and letting him know each week.
3.Felt jittery, anxious and ‘toxic’ – had one panic attack ( not normal for me)
4.At end of second week Dr C recommended stopping for 5 days.
5.After 5 days felt back to normal
6.Dr C recommended 1g each morning
7.4 days feeling ok then resumption of anxiety
8.Dr C recommended continuing
9.After 2 weeks – too much anxiety to easily manage normal ‘mum duties’.
10.Dr C recommended stopping for 5 days
11.I stopped for 7 as anxiety stuck around
12.New dose of 500mg each morning
13.After 2 weeks I was suffering debilitating anxiety
14.Dr C recommended 500mg each morning except Saturday and Sunday
15.Waited until last week as it was Christmas and then husband away which meant I couldn’t afford to bring on anxiety
16.Last Monday (4th March) started on new dose – left arm tremor developed by Wed pm – felt toxic by Thursday, stopped for the weekend but didn’t start again as felt too bad.
17.Next??????????? Was thinking of starting 250mg each morning as per Dr C’s policy of halving doses.
Hope this is useful. Great idea to collect it all in one thread.
Wow Smokeypurple your journey sounds exactly like my sisters , who,is also in the UK, regarding her B1jouney. Currently trying 250mg daily - anxiety is worse on this lower dose but inner tremors ‘jitters’ worse on higher dose. She does take 1/2 Sinemet 25/100 x 3 daily.
smokeypurple -i dont normally have tremors, but like you, i also noticed an internal tremor in my upper arms at night. at first i thought it was a low c/l issue, but its a too high thiamine issue, because every time i needed to lower the dosage of thiamine, and took a break, i wouldnt get them. but they would return a couple weeks later after restarting the thiamine.
Yes all really confusing especially when my sister has inner jitters when stopping B1 as well but was intially a good responder on 1 gm daily. Wondering now if it could be due to the Sinemet😉
Since many have reported that they were able to lower their Sinemet dose or other levodopa product dose once initiating HDT, it seems possible. HDT seems to have synergy with levodopa products and if that is actually the case, then what used to be the correct Sinemet dose, may no longer be. Here is a link to a post that Dr. Costantini previously sent to the forum giving a little background on levodopa in combination with B-1. Clearly HDT does seem to reduce the Sinemet requirement in some people.
I am just about to begin taking thiamine and this whole thread -- but especially your post, Smokeypurple -- is so helpful. We have a lot in common: I was just diagnosed a couple months ago and my symptoms are relatively mild. The non motor symptoms (mood, exhaustion, constipation) have been the most troubling. For motor symptoms, the worst thing is stiffness and I also have some difficulty with left-handed small motor skills. Also the feeling of tremoring (jittery) internally. I initially took Sinemet as a trial to diagnose the PD but now am not on any meds. I am 53, female, 135 pounds. Given my general sensitivity to meds and supplements and all the other factors, plus what I'm reading here, I've decided to start low, at just 100mg daily, and I will report back. I'm curious to know whether you are still taking thiamine. Thank you for your post!
In case you have not seen the following page about everything HDT/B-1 before, here is a link to it and good luck with your testing! It should answer many questions you may have regarding HDT/B-1.
Regarding B-1 dosing on this forum, the effective dose range that has been reported by members so far is 25 mg/day to 4,000 mg/day. Smaller people who are of relatively newer diagnosis (less than 8 years since diagnosis) and minimal symptoms seem to report getting by on much lower dosing that is closer to the bottom of the range than the top of the range. Please read as much as possible from the link to have a better understanding of what to expect from B-1 and any potential risks as reported by forum members or directly from Dr. Costantini. We are still learning about HDT/B-1 on this forum so any feed back by testers and users is useful and appreciated!
Thank you, Art! I had read everything at that link before coming to this thread, so I think I have a pretty good starting place. (I'm all those things you described about a probable candidate for a lower dose.) I've also asked my doc if she will test my B1 level before I start so I can watch what happens there. I will definitely keep in touch with this forum and report my results.
Dr. Costantini's experience with testing his patients for thiamine was that prior to HDT, their thiamine level was in range, but once started on B-1, that level was off the chart. Please let us know how your test goes. Information is helpful for others who are considering HDT/B-1!
Hi fifthbird thanks for reaching out. I had a big break with the HDT and then started again in October on 100mg in the morning. Anxiety and jitteryness came on after a few days as before so I stopped. I have to be really careful as I said before so that I can still carry on with 'mum stuff' successfully.
I'm not sure how to reduce further - capsules seem to start at 100mg. Am cogitating next move.
And thank you for checking in again, Smokeypurple. I wish you well with your deliberations. I am inclined to become overstimulated by things that might have that effect, so I'll see how the 100mg start goes for me. (I understand that the general idea is to start high and then cut down by half-steps if necessary, but my sense from knowing myself and reading others' experience is that starting with a dose like 1g would slam me.) I like Rosenmu's suggestion, below, of splitting the powder in a capsule if needed.
There are a couple of options to lower the dose when you get below 100 mg. One that Dr. Costantini used was to go to every other day dosing which with 100 mg capsules would average out to 50 mg per day. Another potential way is to just purchase 50 mg capsules or 25 mg capsules or 12.5 mg dissolvables depending on the dose a person may be trying to achieve. The lowest effective dose reported on this forum so far is 25 mg per day and the highest is 4,000 mg per day.
Here is a link to 50 mg thiamine HCL / HCI capsules.
Started powder Thiamine grossly 1/2 teaspoon in water twice a day after breakfast and lunch July 2018. British, 5' 1" at 97 pounds, lost 27 pounds in 2015 unknown reason. Diagnosed with PD 2010. Symptoms mild until 2016 when depression, anxiety, right side tremor, decreased range of motion with stiffness led to early medical retirement. Also diagnosed with chronic pain from L4-5 Spondylolithesis, unstable, which has gone from bad to worse. Failed Sinemet 25/100mg as within few doses developed dyskinesia of the left, unaffected side. Ropinerol, Amantadine did not decrease the symptoms and gave me side effects. Continue to take Selegelene 5 mg twice a day as a neuro protective. Started Mannitol July 2015 two teaspoons per day. With this I noted the return of the sense of smell and decreased stiffness. Did not notice any changes with the introduction of HDT until three months then noted less fatigue, less anxiety, less depression, decreased stiffness with greater range of motion and with that improved functional use of the right arm. I continued with oral thiamine capsules 1g with water, without food twice a day. Was not aware until two months ago that Thiamine HCL was required. Since changing to Thiamine HCL 2g per day my tremor is worse, now bad in my left hand too, I am slower and stiffer after 6 months of feeling improved.
I am worried that my PD has progressed and it is counter intuitive to decrease the dose of Thiamine but I will try.
Thanks for sharing your detailed experience. I would recommend before going to a lower dose, to stop for a few days which is what Dr. C recommends we do. And second look for a product as clean as possible ie. Free of fillers. I think that might be why you obtained better results with the powder you used initially.
These are symptoms that Dr. Costantini has described as over dose from HDT. Not sure what type of thiamine you started with, but from what other members have mentioned, 2 grams would be a fairly high dose for a 100 pound person, especially for a person who is not Italian. Some people have reported being fairly stable for months and then the dose seems to cause over dose symptoms and generally it is a dose reduction that they report brings things back to order. Dr. Costantini feels that the dosage requirement may decline in some people as certain cells go through a repair process and the need for thiamine declines. Your previous multiple improved symptoms suggest that maybe such cellular repair has taken place lowering your demand for thiamine.
There are some important points to remember here. Dr. C has stated that as a responder to HDT, disease progression will be very significantly slowed or halted as long as you use HDT. The worsening symptoms is what most members have reported at too high of a dose. Because it is unknown what type of thiamine you started with its hard to say much on that point, but it would seem you will need to work on the dose in a downward direction. Dr. C generally likes a 7 day suspension of HDT when significant overdose is in play. Taking notes during the suspension can be very helpful now and for the future. Notes on how you feel your body is reacting to no HDT. Many members have reported that during the suspension of HDT they often times mention symptom improvement at some time during the suspension, an indication that the old dose was too high. Some members are reporting doses as low 100 ~200 mg as effective so do not let your old dose lock you into the idea that 2 grams/day is necessarily close to optimal, it may or may not be now.
Lastly, Dr. C generally halves the dose of people suspected of overdosing on HDT after they take a week or so off from HDT. Most importantly, you appear to be an HDT responder based on what yoiu said in your post and that by itself is huge!
Thank you Art for your in depth reply. I stopped taking HDT three days ago and felt better within 24 hours internally although I could not give specifics as to how. The tremor is less intense but have noted more fatigue. Plan to continue without HDT for seven days in total and then restart on 500 mg twice a day. Maybe I should shop for B1 powder again but I was not sure of dosage, grossly 1/2 teaspoon in water and the taste took some getting use to. Presently purchase from Vitacost as other members have mentioned, 500mg capsules, which does not give much room for adjusting dosage. Perhaps I could empty the capsules into a container so I have I would have better control over dosing.
Thank you for your comment regarding HDT and the progression of PD, it is reassuring to hear. I appreciate your reply.
Yes, your response of initial improvement upon stoppage of HDT is what others who were overdosing on HDT have reported.
It is worth mentioning that on the "HDT Pimer" page, in the links section at the bottom half of the original post I have a listing for a supplier of 100 mg Thiamine HCI capsules at a very reasonable price that may be helpful in fine tuning your dose beyond what you can do with the 500 mg capsules. It may turn out that you need a 500 mg cap plus a cap or two or three of 100 mg Thiamine HCI in order to fine tune your dose and the 100 mg capsules will make that possible. Here is a link to that post:
We chose to use the powdered form of Thiamine HCL as we felt it would be a more pure form...no fillers etc. We bought a Jewellery scale through Amazon, around $30AUD. My husband is on 500mg x 2 doses and he says you can’t taste anything in the water. I think your half teaspoon was way over the 500mg. 500mg is more likely around 1/4 teaspoon. Good luck with it, it will all be worth it 🙂
Once you have found your optimal HDT dose, the powder seems like a good choice.
During the initial testing phase of HDT, it may be easier and more practical to use tablets or capsules, just because they are accurately premeasured and make precise dosing easier during what can be a some times tedious and frustrating process of finding the correct dose for each individual.
Thanks Art, definitely worth consideration, especially now that my husband is seeing results (I will post shortly his good results) he is probably now able to swallow tablets/capsules again without choking!!
I'm 50 years of age 200 lbs. Diagnosed with PD by way of dat scan Nov 2017, but was in denial since Nov 2014 (when symptoms began). Started taking 4 grams of B1 on 8/19/18. Spoke to Dr C and sent a video to inquire about dosage and he said stay on that. That dose has worked for me ever since. The benefits have been, no more lethargy, no anxiety, better sleep, no muscle spasms, no depression etc. The only symptom that has not completely reversed is tremor although it stops for about three hours when on combination of B1, Mucuna and magnesium. The past week I tried lowering the B1 dose 3 grams a day, but my tremor while off combination dosage has become much more aggressive. So today I'm increasing back up to 4 grams a day.
This is a copy and paste of a post by forum member Don_Oregon_Duck in June of 2018 that has commentary from Dr. Costantini regarding dosing. It is interesting because he describes reaching a state of overdose and worsening symptoms, taking days off from dosing and then seeing improvement as the HDT level started to decline toward a more optimal level. This is why taking notes can be useful, not just for you, but for others that you may share your information with!:
Don_oregon_duck
Don_oregon_duck•
9 months ago•22 Replies
Background: I started the thiamine program without asking my Neuro, not knowing that it should be taken on an empty stomach, that half the dose should be taken before breakfast and another half dose just before lunch. how much to take and without fully understanding what the outcomes might be. Also, I read that magnesium might play a part in the successful outcome. I started immediately taking 4 grams of Thiamine HCL daily. After 8 days my energy level shot up higher than it has been since I have been a PWP. Then around day 72 the energy left me as quick as it arrived. I was in a bad situation.
I WONDER WHAT POSITIVE RESULTS I MIGHT HAVE RECEIVED IF I HAD FOLLOWED THE RECOMMENDED PROTOCOL?????
Easilly suggested that I write to Dr. CostantiniI ask for his advice about what I should do now. He had every right to scold me about not following the protocol. Here is what he said:
Taking the right amount of thiamine the patient can not get worse. If it gets worse may be two causes:
1) With the cell recovery the dose thiamine may have become too much for you. To ensure this, you must suspend the thiamine for 10 days, both the good effects may persist months, and in 10 days the bad effects subside.
2) the vitamin b6 which is contained in all the multivitamin may antagonize dopamine systems. So it should also suspend all vitamin-based supplements. Let me know how you are between 12 days and for the doses we'll adjust accordingly.
If you read his comments closely you will find lots of good (and new to me) information.
I stopped taking the thiamine and multivitamin and got ready to feel bad. SURPRISE, I STARTED FEELING BETTER. I played a round of golf on the first day that I stopped the program. My first round of golf in over three years. On the second day, another round of golf. Two days of golf back to back. That will go down in the record books. I am so excited to find out what Dr. Costantini will tell me what to do so that I can feel better than I do now.
I will post the information that I will send to Dr. Costantini, about how my health has been, by that time, over the past week and one half.
This is a copy and paste from a post by dreilly942 on 3/12/2019 discussing how they arrived at their optimal dose.
Ok, so was taking 4 grams a day, 2 grams in the morning and 2 grams in the afternoon which I'd take with 100% Mucuna pruriens which is what I use for ldopa. These worked well together but when I went on to my third dose for the day it didn't seem to bring much relief especially with tremor and I think that's because I had already used up my intake of B1. So today I decided to spread out the B1 dosage. I had 2 grams in the morning, 1 gram four hours later and 1 gram in another four hours and this has brought much relief from the tremors. 😁
This is a little tid bit of dosing information posted by Danasrin on 3/13/2019.
I don’t take any Parkinson’s medication as I don’t have tremors. I take b1 Thiamine hcl which has almost eliminated all my other symptoms. I don’t have PD, but I do have parkinsonism. Put simply it’s PD without tremors and no clear progression. I’ve stopped the progression with b1 Thiamine hcl.
mannpin reply to Pilot108
40 minutes ago
I started with 1g twice a day. I’ve reduced that to 1g in the am and 500mg in the afternoon. Sad to say but I am obese weighing 180 lbs am only 4’10”. Depression medication did that to me. I take b12 trying to defeat fatigue. I also take vitamin C and D, b complex and calcium. I take the calcium for bone loss and D for aging. I don’t take medication because I don’t have tremors.
My husband takes PD meds and was diagnosed with Parkinsons but also Parkinsonism. Does not have any tremors. DatScan showed loss of dopamine. Soft voice, trouble getting up and down, trouble walking and sometimes freezes. Full Spectrum CDB oil has helped.
Going to start the B1 therapy after our mini vacation. (sorry can't seem to get rid of the bold text).
Neurologist gave husband the PD meds (carbidopa/levodopa) and said if this helps you have PD. We figured it helped but who knows for sure if this helped or IV glutathione and glutathione liposomal helped.
We were told you can have PD without tremors. I tell my husband he has Parkinsonism because he accepts this better.
This is a copy and paste of a post by PDGa14 on 3/15/2019 regarding dosing and how to know when to stop and reduce dose :
Dr C recommended I start with 1000 grams first thing in the morning, stressing that if at anytime I felt worse, to stop immediately (and contact him). It was a sign of too much.
This is a cut and paste of a post I put up today 3/15/2019 regarding dosing of HDT :
Yes, Jim, I understand what both you and Roy are saying. Roy refers to 4 grams as a therapeutic dose because that is the dose that worked therapeutically for him, but HDT dosing is "very individualized" for each patient ! Roy is weighing in around the 190 pound area and had very significant symptoms when starting on HDT. One size does definitely not fit all PWPs and if you think you are going to come in weighing 120 pounds and take 4 grams of B-1 per day to good effect, you will almost certainly be very disappointed and likely to have a worsening of symptoms in short order or at least that is what I have seen happen often enough to know that there is no standard dose when it comes to HDT as Dr Costantini has clearly stated on the HDT FAQ page!
I started with 3 gms thiamine/day per Dr C's recommendation in 6/2018, and after 2 reductions in dosage (due to worsening of symptoms), i settled on 1 gm/day - 500 mg at breakfast and 500 mg at lunch. After 3 weeks at that dose and I have noticed the following---
Before thiamine - distonia of feet about 4 am (cramps in feet and curling under of toes),the only thing relieving it was a half dose of C/L.
After thiamine - no distonia at all, no need to take dose of C/L until i get up at 6 am.
Before thiamine - when walking up stairs, I would be unable to slow down and felt like my legs were being propelled by an unknown force.
After thiamine - can walk up stairs normally.
Before thiamine - when kneeling on floor/ground to do things like washing floors or gardening, I was unable to stay in that position for more than about 10 seconds. I felt that unknown force again forcing me to stand up abruptly.
After thiamine - able to stay in a kneeling position for several minutes.
I had been showing improvements with homeopathy and mannitol, but that was over a longer period of time. the improvements since taking the thiamine have occurred in only 3 weeks.
Update on thiamine dosage - After several adjustments (due to worsening of symptoms), I am at a "low dose" of thiamine at 200 mg/day as of 1/19.
HDT update - 3/17/19 After adjusting dosage once again to only 100 mg thiamine per day, for the past month or so, I am currently taking a break altogether (for the past week), due to worsening of symptoms. I notice that every time I start up again, when I must be getting too much thiamine in my system, that I get this internal tremor in my upper arm at night. (I never have tremors). I need to lay on the affected side in order for it to stop. At first I thought it was a low C/L issue, but it is a too high thiamine issue, because it stops when I take a break. Also, I think it may be causing my asthma symptoms to worsen. The verdict is still out on that one. I still have to wait and see. I will update in a few weeks.
Have you considered every other day dosing or every third day? It sounds like you need the thiamine , but at 100 mg per day it still can over build in your system?
Easilly - Yes i might try mon, wed, fri. What happens if i stop completely? Do i revert back to my pre-thiamine state or will i just stay at where i am at now?
Since it seems you slowly work back to the overdose state at that dose. you know it is close , but just a bit high. Perhaps every other day will be just enough to maintain you "in range" without the slowly working back to overdose range. The dose you are using is very safe based on what other members have reported on the forum.
It may turn out that all you have to do is take Wednesday off, but you will have to continue testing to reach that fine tuned point.
I have seen another member mention that they start to get a jittery feeling as a first sign of overdose that they can readily recognize and whenever it appears they merely skip their next dose and all is well. You just have to use your imagination when the dosing becomes this fine in order to figure out what works best for you!
Hi Art. After 16 days of 100 mg my husband was shouting in his sleep. So it appears that 100 mg is too much. His blood pressure was also slightly elevated. Getting the right dose is really proving to be tricky. Will stop for 5 days and take it alternate days or just mon-fri.
This a copy and paste of a post by Mogul1 on 3/17/2019 discussing HDT dosing and related.
Thank you for your contributions. Your PWP journey has a lot of similarities to mine.
I feel like I have been living the life of a PWP guinea pig, trying anything and everything!
We have chatted about our experiences with C/L and Rytary and I have some updates to describe that I am kind of excited about.
I had been taking generic C/L 50/200 produced by Mylan Pharma. They stopped supplying my local pharmacy and I noticed this because the pills were a different color (beige instead of light blue). There was a difference in quality. I based this on an increase in off time during my day.
That was when my neurologist suggested I try Rytary. I switched to Rytary last March (2018) and had a number of bumps in the road. That is when I learned about “Stacking”, a characteristic of time release meds that I described as “stock piling” which was an accumulation of Time release meds that haven’t released.
This would happen at the end of the work day, and the effect was feeling amped up, aggressive, and inclined to crank up the music in my car and speed home like a mad man. This was scaring my wife and l knew it was happening, usually because a part of me was watching all this as if it was a movie. It was beginning to jeopardize our marriage.
So I switched back to generic C/L in December. We were going to Kauai, where I proposed, and at this stage, my behavior was scaring me!
No way to start a romantic vacation.
When I picked up my C/L prescription I discovered it was manufactured by Sun. It’s poor performance was extremely disappointing. It would wear off in less than 4 hours dropping me like a rock, and taking forever for new dose to kick in. I called all the pharmacies in the vicinity and discovered the only C/L available was made by Sun.
All this time I have been taking Azilect and B1 thiamin in pill form2-3 grams per day.
Didn’t consult Dr. C (but I am praying for him now.). Started up taking too much B1 then backed off like you did and settled on 3 grams Hoping to minimize PD progression. No dramatic results from B1, but I have found that many of the changes have been gradual and subtle as opposed to immediate and dramatic.
So I gave Rytary another try even though I think I was afraid of it, but I realized that I was taking too much. Originally, I was taking 4 caps 3 times a day. Now it’s 3 caps 3 times per day with the idea that I can taper to 2 It’s working on 5 hour increments.
Oops gotta go. To be contd.
This is a copy and paste of a very detailed escalation of HDT dosing by forum member Niggs posted on 3/17/2019 and is definitely worth reading if you are considering testing HDT!
A full detailed report will be posted if and when I achieve a month of improvement.
I've finally stabilized with sinemet cr 5x 200 and 10mg requip xl after 2 yr of drug adjustments and changes. I'm 10 yr post dx and would describe my symptoms as severe and poorly controlled.
I'm rigidity dominant and my main symptoms are pain, anxiety, rigidity, stooped posture and bradykinesia plus the usual suspects, insomnia, constipation etc, etc
The above has left me virtually housebound.
Male: 55y 6ft 101kg
B1 HDT TRIAL ------- solgar B1 hcl 100mg & 500mg
100 mg – 2 weeks = no improvement
500 mg - 3 weeks = no improvement
1 gm - 2 weeks = no improvement
1'5 gm – 1 week = mood/mental health transformed
At 1'5 gm there was a dramatic reduction in anxiety & elevation in mood, noticeable to others. Some easing of rigidity, drinking without a straw for example, but minor and brief. At this point I should've run with 1'5 gm for at least a month. But I wanted to know the upper limit, the 'overdose figure' thus narrowing down my likely therapeutic zone .
2 GM – Day 1 = no change
Day 2 = no change
Day 3 = suddenly for 1 hr 70% improvement in symptoms. This is largely a subjective guestimation, but based on the fact I felt amazing! For example, at my worst I sometimes need to be 'pulled' up from an easy chair. For that hour, I swear I could 'spring' yes spring from a seated position to standing without even using my own hands for assistance! + visited friends.
Day 4 = sadly a gradual worsening from 7.00 pm
Day 5 = worse still and inline with the protocol decided to cease B1 for 5 days
Day 6 = first day without 2 gm or any B1. Started poorly but by 11.00 am after my 2nd sinemet cr felt really good for the rest of the day? My theory is that I hadn't built up that much B1 in such a short time and therefore it faded quite quickly and that by mid-morning I was passing through the sweet spot of B1 levels for me.
Day 7 = Bad all day. But was fascinated by the experience so far. So in the interests of science started on B1 2 gm. Again I was feeling great! Notice how the effect is now immediate whereas it took 3 days before, clearly residual B1 was still effective.
Day 8 = This is where it gets very interesting. Took 1gm early a.m as before, for 1 hr felt good. But ! At 9.30 I suddenly felt dizzy, weak, rapid pulse, shaking (not like dyskinesia). I felt dreadful all day. I still took my 2nd 2 gm B1 dose at 12 pm. I was by now fully PD'd up and in a mess. But I was starting to wonder.
The experience felt to me, and believe me I've been through it many times, like
withdrawals! I've some low dose madopars to play with and wondered if they would make things worse or better. If the B1, when too much, is increasing the dopamine or drugs in my brain then a 'hit' of l.dopa should make me feel worse. If too much B1 in some way inhibits or drops the same then it should improve things. It improved the situation, and as the B1 waned over time my regular meds increasingly made me feel better. By day 9 I was back to norm.
Day 9 was yesterday, I stopped B1 and my day was a very similar repeat of day 6. Rough start until the afternoon and then a really good day, possibly as the B1waned again briefly passing the sweet spot (1750 mg?)
Day 10, today 17/03/19 Very PD, but easing as day goes on and meds build up.
It's worth noting that I am very sensitve to psycho-active drugs. I've never been able to tolerate ssri's, ropinirole was a 'shit' from day one and still is. Every titration, reduction causes me weeks and weeks of grief. They say 3 months to fully accept a new dosage. It was 12 mnths before 16 mg of ropinirole but me in hospital. My point is the above is 'my' experience and may well not be like anyone else's.
Below are some personal notes and observations. I seek neither to preach or teach, my only aim in posting is for a better understanding and if it helps someone, that would make me very happy.
I now have a supply of 500, 100, and 250 mg B1 hcl and am starting a months trial a 1500 mg with the ability to increase by smaller amounts.
B1 most definitely has symptom relieving properties.
The dose is critical and rather than some folk not responding it may be they're more sensitive and therefore will respond to a more precise dose ie 1200, 1750 etc
As it has helped those not yet on conventional treatment it would appear to act directly on the brain. However, my experience is that it definitely also affects DA's and L.Dopa. I experience the same temporary bio-markers with B1 as with normal meds. Slight temporary 'start of dose' dyskinesia, increase in urinary frequency, increase in libido as examples.
I normally have considerable fluctuations, and always have had, in my symptoms. It is very easy to blame B1 when it could just be coincidence you're going through a rough patch.
It acts as a diuretic in me. And dehydration is a constant problem. Not dehydrated in a clinical 'put him on a drip' sense but in a parky sense. Low hydration = drugs not as effective = constipation = drugs not a effective = drop in dopamine and trouble.
Please feel free to use or ignore as you see fit.
This is a copy and paste of a post by forum member Jimcaster discussing a dsoage adjustment he attempted recently and the results of that adjustment.
I am non tremor dominant and have been taking high dose thiamine since last May -- within weeks of being diagnosed. I think it has helped with arm swing while walking, general rigidity, anxiety, and just having a sense of normalcy. My only tremor occurs occasionally when I intentionally try to point with my right thumb or index finger. I was just on vacation in Mazatlan and thought I'd be smart and take an extra 500 mg for a couple days because I was drinking more alcohol than normal. It could be coincidental, but my tremor and sense of well being worsened. I'm convinced I respond well and that 1.5 grams daily works best for me. I don't take medication, but do take several other supplements and vitamins.
This is a copy and paste of me responding to forum member munchybunch discussing her husbands HDT dose on 3/17/2019.
Thank you for that munchybunch! That 85 kilos = 188 pounds and using 4 grams of HDT per day. Roy is weighing in around 190 pounds which is fairly close to the 188 pounds that your husband weighs and they are both at 4 grams as their dose. I will add this information to the HDT Dosing page.
Thank you again for this dosing information!
Art
This is a copy and paste of a reply I made to forum member Jeeves regarding HDT dosing and response that I thought might be helpful in this thread to give a little perspective on dosing and response. 3/19/2019
I think that many HDT testers who post the best results may sometimes have a significant amount of symptoms and symptom severity and also happen to respond quickly to HDT so they may be somewhat surprised by the quick and very significant response they have gotten early on from HDT and their posts reflect this surprise. On the other hand, if those same people had taken three months to see their first improvement and then every other benefit came one at a time over the following 6 months to a year, the gradual change might not be perceived as so amazing even though they would still be in the same place.
It is easy to forget how bad we were when the benefits come slowly over time and that is the reason that Dr. C insists on the videos, because so many of his patients had felt that they had not improved on HDT, and some, even felt they had worsened, but when they went back and looked at the videos, the improvements were obvious, even to the lay person! Forum member Celtis, is one of the best examples of this. He had been on HDT for many months and was thinking that he had not improved much if at all. Then he read the HDT page that list the 80 symptom improvements that forum members have reported on this forum at this link:
Art, thank you so much for what you have done /do for us all. I had started to doubt the benefits a little, thinking it wasn't working as well as I had thought it would and I realised, reading your list
, that I could list a lot of those benefits : better handwriting /typing, depression lifted, greater energy, better sleep, feeling like the person I used to be, finding my old energy and creativity again... so, though my tremor is worse, I think I just have to persevere with getting the best dose. Your post is the most encouraging thing! Thank you.
This is why I recommend to people testing HDT to not only make the videos for Dr. C, but to make their own videos that are much longer and show the person doing all types of everyday activities like going up or down stairs, walking up and down the street or in a large figure eight, taking broad exaggerated steps, turning in circles, speaking for an extended time, while eating and talking and walking at the same time etc. These longer videos will give you a very good idea of exactly what changes may or may not have taken place over the HDT testing period. These videos give the historical perspective of symptoms that we sometimes forget over time, but the videos keep it real and erase or confirm any doubts.
As far as those nosedives, it seems that even PWPs who have exceptional symptom control, run into them and stress is often mentioned in the same post!
As far as whether HDT is doing anything useful for you, you always have the option to stop taking HDT for a couple of months and that should answer any questions as to what HDT is or isn't doing for you and if you determine that it isn't doing anything for you then that will be less pills that you have to take and if it is helping you, then you can get right back on HDT and resume the benefit just as it used to be with not much of a loss to you!
Art
This is a copy and paste of a post by SCT25 in February 2019 discussing dosing escalation under favorable HDT conditions.
I started taking Thiamine the first of the year. I purchased Thiamin Hydrocloride, 300MG capsules, 100 capsules per bottle, GNC on Amazon for $14.99.
At Dr. C's recommendation I started with 2 capsules morning, and another 2 capsules evening for a daily dosage of 1200MG. At the end of my first month I had noticeably better balance especially when in an off period like just waking up. Freezing was almost nonexistent, and my girlfriend said I was smiling more. I also experienced NO adverse side effects. At that point, and with Dr. C taking care of personal matters, I decided to bump it up ever so slightly. I am now taking 3 capsules morning and 3 more evening for a daily dosage of 1800MG. My body continues to gain flexibility, range of motion, and fluidity. My mood has also improved. Things are looking up.
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This is a copy and paste of several posts by forum member Catherinaw on 3/21/2019 where she discusses how she started HDT dosing at 4 grams per day and over 3 months time reduced to 100 mg per day to good effect! There are comments from other members included to give continuity to her comments. I wanted to post this as an example of how just 100 mg of HDT has shown itself to be very effective for some members! Further confirmation that "HDT is definitely not a one dose size fits all"!!!
I have been taking it 3 months and yes significant results. The feeling of normality is the only to describe it. I have even reduced mucuna pruriens. I don't take meds and was diagnosed 7 years ago. Please keep going. It's finding your right amount of B1
I went up to 4g as he recommended. If you overdose on B1 you have sleepless nights but you need to do that to Kickstart the process. Then I stopped and started again, this time got to 3g and I kept on until 100mg seems the right amount for the moment.
Hi, please confirm that you went from 3000 mg (3 grams) of B1 a day to what you now consider your dose of 100mg a day. A big difference, if I interpreted correctly.
Just a mention for people who may have a significant number of symptoms or significant severity of symptoms or both. Overdosing on HDT can potentially worsen symptoms to a new all time high, but Dr. Costantini has said that any worsening of symptoms is temporary in all of his years of experience with thousands of patients in total.
A new "worst ever " as symptoms go can be scary! Stopping at that point should allow the symptoms to subside according to Dr. Costantini and then he would start again at a lower dose after a week to 5 days off from HDT.
Art
The following is a copy and paste of a post between myself and forum member healthabc discussing the point that 100 to 200 mg of HDT proved to be an effective dose for them! This is an important point to make because some people have the mistaken notion that HDT means you must be taking grams of thiamine for it to work, but clearly, some people are much more sensitive to thiamine than others and in some cases, 100 to 200 mg of B-1 may be all that is needed in order to get benefit from HDT!
Have you found any benefit at 100 ~ 200 mg per day of thiamine HCL? Some members have found benefit at that relatively low dose.
Art
Reply
healthabc
healthabcin reply to easilly
11 hours ago
yes!
This is a copy and paste of a reply I gave to Todd-pw regarding dosing and what some members have tried to find their correct dose and I thought it belonged here as well. 3/27/2019
Some forum members have found benefit for muscle cramping using magnesium chloride oil applied topically to the affected areas. Certain types of magnesium that are better absorbed can help with cramps also, but the mag oil is fast acting and can also help to relieve joint paint and relax muscles. Click on my icon to read a post about magnesium and its use in PD.
Like many more recent testers of HDT, it is becoming common that lower dosing is quite effective for some people. The lowest effective dose so far is only 100 mg! Dr. C has stated that the doses used for HDT do not kill people. Generally there have been two common ways that people test HDT. The most common was to start high and work down so many people have started at 4 grams which is at the higher end of the range and looked to see how they respond. For some like Ernie and Roy, starting at 4 grams per day, turned out to be their ideal dose and they were good from day one. Others who started at that dose found initial benefit for the first week or two that diminished quickly and soon became a complete worsening of symptoms which indicated that the dose was too high and in those cases Dr. C had them stop HDT for 3 to 7 days and what happens during this "HDT off period"can give clues to future dosing. The sooner you start to see improvement after stopping HDT, the more chance that you were close to your optimal dose. The longer it takes to see benefit once stopping HDT, it is likely that you are quite a ways from your optimal dose.
Others have started low and slowly continued to add to their dose until they just started to see signs of worsening of symptoms, especially tremor increase and once they reach that initial point of overdose, they stop HDT and then go back to the last dose or two that did not produce increased symptoms. It is a lot of trial and error and frustration for some, but imo, it is worth every second spent if you are a responder because the benefits seem to be very durable and the specific benefit of significantly slowing or halting disease progression is priceless!
Yes, several members have even been able to lower their C/L dose after adding HDT to their existing regimen. The other upside to this scenario is that Dr. C has stated that once you have your levodopa product and HDT dosing adjusted optimally, you should never need to increase your levodopa product dose again for the duration. This goes against the idea of having to increase levodopa dosing as time passes until a maximum dose is reached and the effectiveness diminishes. That seems like a pretty nice plus imo!
After finding such success with magnesium for stopping foot and toe cramping (one 250mg tablet when I get up) I decided to add B1 to my routine, (one 100mg in the morning, another before dinner), along with two 25/100 sinemet/day. I’m really new at this, but feeling virtually symptom free now. I’m 72, and hoping I can live with this for the duration. I’m so grateful to this forum for the shared experiences and encouragement to us newbies.
This is a copy and paste of a post by RoyProp on 3/28/2019 in which he discusses his dosing schedule of HDT :
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Google search: Doctor Costantini Parkinson
Dr Antonio Costantini, carapetata@libero.it
highdosethiamine.org/therap...
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Parkinson's Relief, Questions and Answers
Guide:
1. Read page, About, open links.,
2. On Files page, open B1 FAQ document.
3. On Files page, download First Appointment document, answer and submit.
4. read Announcements
This is a copy and paste of a reply by me to forum member Pa-zzi69 / MarcP regarding the use of videos while testing HDT .
The videos that you would normally send to Dr. C only needed to be about a minute or so per video because he has become so adept at analyzing them that that is all he needed to see to make determinations. Since he is currently in recuperation mode, there is no need to send videos, but you should still take videos for your own reference. The videos that he requires need to be of you walking, talking, writing and a video of you performing a "push test". The push test video is also useful for helping to pinpoint your optimal HDT dose because when you get a good response to the push test, that generally means your dose is very close to optimal along with the improved symptoms.
What I have suggested to the forum members is to make much longer videos of yourself doing even more diverse activities such as walking in a figure eight, traversing up and down stairs, talking and walking at the same time, walking outside at a quick pace if possible, bending and stretching, push test, etc. The point is that these videos will give you a very good perspective of where you started and can be used for comparison after being on HDT for awhile. A major problem that Dr. C ran into is that patients who improved slowly to very slowly often told him that they had not improved or possibly had worsened symptoms, but once they went back and looked at their videos, the improvements were very apparent. I have seen this phenomenon enough to know that it is real and this is why I suggest taking longer and more diverse videos so that even the untrained eye can discern any changes.
For the very fortunate HDT testers who respond to HDT very quickly as in the day of the first dose or first week, the changes are very evident and leave no doubt that they are responding, but the ones who take months to see their first improvement followed by single individual improvements over more months, it becomes easy to forget how bad you were compared to how you currently are and this is where the videos show the most value, but everyone who is testing HDT should take regular videos to avoid this common problem.
Lastly, Dr C has said that no further additional benefit is seen after 6 months of HDT use, but members on this forum have reported additional benefit beyond a year, so never just assume that you have plateaued at the 6 month mark.
Art
This is a copy and paste of a post by AlpacaGal on 3/28/2019 where she discusses her dose escalation in order to find her optimal HDT dose with very good results!
I've been on HDT for nine weeks now. Started at 500mg daily, added 500mg more each week until I reached 2.5 grams. Feeling great, absolute improvement on so many levels including minimal foot drag now and no cane! I did suffer from leg and foot cramps more with HDT but added one 1000 mg magnesium malate with each dose of B1 (so twice a day) and cramping has resolved. No longer sleeping half the day away. So incredibly grateful for the information that has changed everything.
This is a copy and paste of a post by forum member ion_ion on 3/20/2019 discussing dosing that was effective.
160 lbs. I started in March last year with 2g/day, 1g around 9 am and 1g around 3pm. I saw very good improvements after four weeks. Now I settled to 1g/day taken at 10 am. Two months ago I started c/l 2x100/25 per day to see if helps with tremor; a week ago I increased to 3xc/l per day. The single symptom left is RH tremor which depends of the stress. HDT partially helped with tremor at 1-1.5g/day but made it worse over 2g/day (I tried 3g/day).
This is a copy and paste of a post by forum member Cons10s on 3/29/2019 discussing a 5 day suggested break period from HDT as suggested to her by Dr. Costantini every month to lessen the jittery feel that some HDT testers have reported on this forum. Others have mentioned taking a break also to try and overcome the jittery feel, but his 5 day break is the longest that I have heard for this purpose and it came directly from Dr. Costantini.
While in Italy last September Dr. Constantini told me to take five day breaks each month. At first I didn’t follow his instructions but finally once I did I found it to be extremely beneficial. I still take a five day break each month and always know when it’s nearing as I get jittery and feel slightly overdosed. The five day break is like hitting the reset button. Works very well.
I’ve been using HDT for exactly one year now.
This is a copy and paste of a reply I made to forum member TL500 regarding pausing HDT and adjusting dosage on 3/30/2019.
If you are pausing HDT because of worsening symptoms due to possible overdose, those worsening symptoms should decrease as your thiamine level starts to drift back toward your native B-1 state after pausing HDT. Any symptoms that have worsened due to HDT, have always returned to their normal level once the B-1 level declines in your system. Once your pause period is over in 3 to 7 days, Dr. C has you restart at a new dose that is determined at least partially by how your symptoms reacted during the pause period. Take daily notes during the pause period to help determine which way and by how much the dose should be adjusted.
Two common reasons to pause HDT are that you think your dose is too high and you want to reset your dose or you are planning to take an HDT vacation. The vacation is normally only done well after a year of being on HDT and feeling very steady in terms of symptom control and you can produce a good push test. With that combination of events, then a vacation can be considered, but if it is a first vacation from HDT, you will have to pay attention to how your symptoms are responding once you stop HDT. Some people have reported that they are only able to go a a day or two before symptoms might start to increase while others have reported being able to go two months on vacation before symptoms start to worsen. HDT is a very individualized treatment and varies considerably from person to person, pretty much like any treatment for PD.
Stopping for the purpose of adjusting your HDT dose due to possible B-1 overdose is a pause from 3 to 7 days. If you are overdosed on HDT, generally your symptoms will worsen and can potentially worsen to a new worst ever. A clear sign of too much B-1. By stopping at this point, your thiamine level will start to drift downward. As the thiamine level drops, the newly worsened symptoms should start to subside. How quickly or slowly the newly worsened symptoms decline gives you a clue as to where your optimal dose might be in comparison to your last dose. If the worsened symptoms improve quickly upon stopping HDT, that is suggestive of the idea that you were fairly close to your optimal dose, but possibly a little too much B-1. If it takes awhile for the symptoms to subside, then you are likely not that close to your optimal dose and in such cases, Dr. C has suggested halving the dose you were taking after you have finished your "HDT pause".
To date, in Dr. Costantini's patient group of over 3,000 patients on HDT, any worsening of symptoms due to HDT overdose, has been shown to be only temporary and resolves once the overdose is corrected.
Art
This is a copy and paste of two posts, one by forum member Pa-zzi69 and a reply post by me regarding a possible HDT overdose situation on 4/01/2019.
Your 3.28.19 response is MUCH APPRECIATED because I find it DETAILED and RATIONAL !
My background:
3.13.19 START B1 at 500mg/day
146lbs, age 77, 15 months after early phase diagnosis, now updrs 15/100, still ignoring neurologist prescription for Sinemet, one single step backward in reaction to pull-test.
After reflecting on your 3.28.19 input, my journal:
3.29.19 temporarily STOP B1, fearing overdose after full-body shakes interrupted my sleep last night with tripled intensity: 3 times, 2 hrs apart, compared to a single event per night a few days prior; enough to strengthen my suspicion of B1 overdose based on a mild increase in left-arm tremor which I was about to ignore [and continue at 500mg/day]. I now plan to re-start at 250mg after 7days without B1, on 4.4.19
4.1.19 the full-body shakes in my sleep have not re-occurred in the last 3 nights
Q: Do you support my plan to re-start B1 at HALF DOSE [250mg] on 4.4.19 [after a 7-DAYS STOPPAGE] ?
Q: If my symptoms were to worsen significantly in the next 3 days, i.e. if the full-body shakes were to interrupt my sleep again, what would you recommend ? could it be an indication of UNDER-dose and would you recommend a return to 500mg in one step ? or in two steps, as in one-week at 250mg, then 500mg ? or in finer steps of 100mg ? over a different period than one week ?
What you are describing is textbook Dr. C strategy to deal with a B-1 overdose situation. Take B-1 at an initially recommended dose, if symptoms improve with the initial dosing, but soon worsen within a week or two, this is a positive indication of B-1 overdose and this is what you are describing . Stop the B-1, give it 3 to 7 days for your B-1 level to reduce back closer to your native B-1 state and then restart at a half dose. This is Dr. C's normal recommendation and has worked quite effectively for many! That's what we are trying to do on this forum is follow his learned advice because he is the one with the years of experience at implementing his HDT protocol! I can't and won't argue with his experience, because there is no need to.
What seems hard for people to grasp is the idea that B-1 dosing for PWPs can be so varied or random. I would say that one mistake that many HDT testers make is assuming that there is some standard dose for HDT............."""""""""THERE IS NO SUCH THING!!!"""""""""
Dr. C made this statement very clearly in his very first answer on the HDT FAQ page here:
Why anyone feels the need to go against that advice is beyond me!
The actual range that we now know for HDT in total is 100 mg to 6,000 mg per day!!! That is a huge spread! I have not seen any members on this forum who required more than 4,000 mg per day, but Dr. C has mentioned that some of his patients in Italy have required that much and possibly more for other neurological disorders. Dr. C has only very recently found that some members of this forum have shown benefit at 100 mg/day, whereas his previous low was 500 mg/day. I can't say for sure, but I think there may be one forum member who is possibly using less than 100 mg/day because they were still getting mild overdose symptoms and was considering staying at the 100 mg/day dosing except possibly skip a day now and again in order to avoid any B-1 od symptoms!
Art
This is a copy and paste of a post by forum member Millbrook on 4/3/2019.
My husband was on 500 mg B1. He had been on 1 g earlier and had active sleep jerking and punching in his sleep. After stopping 5 days, In the 2 weeks of 500 mg had 3 episodes of jerking in sleep. I stopped for 4 days during which he did not sleep well almost immediately but no jerking. I have just started again at 350 mg because he takes a B complex which has 250 mg thiamine mononitrate, B6 250 mg and B12 1000 mcg and an additional 100 mg of thiamine HCL. Hope we are near his optimum dose.
This is a copy and paste of a post by forum member Reginald1 on 3/30/2019.
I have been taking 1gram a day for about 2 months and have noticed a big change in my moods, I am not feeling anxious or depressed since taking it. I have virtuously no tremors so this is all I have to go by..
This is a copy and paste of a post that I put up as a reply to a question about why some people respond to HDT some do not seem to respond to it and I felt it would fit here also. 4/5/2019
Since I tend to gather posts about HDT, a lot and I read a lot on this forum and elsewhere, I can see a couple of reasons why HDT does not help everyone who tries it.
First and foremost, no drug, no supplement, no alternative treatment and not even exercise works for every PWP the same and sometimes not at all for some. As a basic example of this, consider Sinemet, a standard treatment for PWP for many many years. I can't begin to count how many times I have seen it posted here or elsewhere that it not only did not work, but it made the patients symptoms worse or even caused hallucinations or dyskinesia in some people or orthostatic hypotension in others. Sometimes this is due to an incorrect dose or it just does not work for some people the way it does for others. This is a fact of life in the world of drugs and supplements and to think it is going to be somehow different for HDT, may just be a wrong way to look at it. When one drug does not work as hoped or expected, doctors will try the next drug that they feel might work based on their experience and understanding of the problem, but the fact remains that sometimes things that work for others may not work the same for all.
In the specific case of HDT, it has already shown a propensity to have a delayed response in some people and this has been made very clear by the reports on this forum because members have reported it taking three or more months to start to see a single symptom improvement! If that is the case for some, then it is likely to be the case for others. With that potential possibility in mind, how then can you try HDT for 30 days or 60 days and declare that it does not work for you with certainty?The only true conclusion that can be drawn from that scenario is that HDT did not seem to work for you for the period that you tested it and that would be an accurate statement, but to just say that it did not work for you period, may be a premature conclusion that may be wrong. What if you are actually one of these delayed response people and another 30 days or more may have shown a different response? Dr. Costantini feels that B-1 possibly repairs certain cells. If that is a correct assumption on his part, if there are a large amount of damaged cells to be repaired, it could significantly add to the time before meaningful results may be seen. Another issue is the condition of the gut which could easily affect absorption of HDT or anything we ingest and this could easily explain why his intramuscular injection patients seem to get a significantly better and more consistent response to HDT IM over HDT orally.
Many members have reported benefit in as little as minutes after receiving an HDT IM injection and even those using oral dosing have reported benefit as soon as the first day of their first oral dose and for them this is great, but for someone reading one of those posts, it is very easy to become discouraged, if they are on their 46th day of oral dosing with no apparent benefit yet. That may be just enough to convince themselves that they are not going to respond to HDT and then just give up on it, possibly prematurely. Clearly HDT, nor anything else, works for everybody exactly the same.
In my opinion, because of the potential benefits that HDT has shown in many PWPs and other neurodegenerative issues, combined with a very good safety profile, it is worth making as much of an effort as is tolerable for the individual to see if it can work for them.
Art
So Art or Easilly was promoting B1 prior to his “ephipany”? Everything in this post shows him providing detailed information and advice. Maybe this is the post that got him into trouble?
"...Oral thiamine should not be taken with juices or any sour beverage, water only...."
I did not know this. How important is this? When i tired B1 last year it did not work for me. But i took it with my other meds which i always take with grapefruit juice, which i benefit from. So i am going to retry in a day or two....with water only.
I've been taking B1 for almost 17 months. I started with 500 mg/day, went up to 1 gram/day after a couple of months, and stayed at that dose for almost a year. I definitely felt so much better, and most of my symptoms disappeared. I've been playing around with my dose quite a bit for the last few months because some of my symptoms were reappearing and my tremor was getting worse. I'm only taking 500 mg a day now, and I skip a day once or twice a week. I'm considering buying 250 mg capsules so that I can take a smaller dose in the morning and another in the afternoon. When my tremor starts to get worse or other symptoms start to appear, I skip the B-1 for a day and everything settles down again.
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Interview of Daphne Bryan following the publication of her book: “Parkinson’s and the B1 therapy”.
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