Started taking powder form B1 (1 gram) in some Gatorade and even so it is very bitter. So far it's fine. Will keep you posted on progress. I can say that I feel some immediate relief from dyskinesia five to ten minutes later. Even if it's all in my head 😁😁 it sure feels good.
B1/Thiamine start @4:20pm est 8/19/2018 - Cure Parkinson's
B1/Thiamine start @4:20pm est 8/19/2018
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Erniediaz1018
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77 Replies
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I invested in a jig to make 400 capsules at a time. Takes a good part of an hour though.
I'm Going to go that route. Are you in the US? Did you receive it already and if so how was it working for you? Is it easy to use.
It works and it is well-made, but using it is a bit of a project and takes a good part of an hour to turn out the 400 capsules, from start to finish.
Park_bear can we get a link to that jig? Interested.
capsulcn.com/manual-capsule...
😬 expensive
5 plexiglass sheets precision machined 400 places. Cap 'em Quick jigs for 50 capsules can be had inexpensively.
You can get capsule filling machines on Amazon that are a LOT cheaper. I've never used one though, so I don't know why the one linked above is so expensive and the ones on Amazon are so cheap (in comparison).
HI there .. Are you doing this to control dyskinesia ?
I take it you are referring to high-dose thiamine?
I take high-dose thiamine to remedy Parkinson's in general. It seems to have reduced my tolerance to levodopa but it has reduced my symptoms overall so it has been a win.
I give mom B100 .. which has all the B's apart rom her multivit .. so u think addig a lil extra B1 might help ?
High-dose thiamine / B1 is a special protocol that needs to be attended to carefully. Please see the following post:
The dyskinesia kicked in again about 6pm but then about 8:30pm it eased off. Dyskinesia is very uncomfortable and overwhelming so when it eases up it sure feels good 😊. Will keep an eye on it because I'm under the impression that B1 is relieving the dyskinesia. I also think the dyskinesia is brought on by the MP either the brain is not processing it well or I'm taking too much (1/4 teaspoon twice a day). Anyway I'm just sharing my self diagnosis maybe someone could make something of it and receive some benefit or at least be encouraged. No one is able to fight harder than you, to get better.
• in reply toErniediaz1018
MP? Mucuna Puriens? 1/4 tsp day, not near enough.
Erniediaz1018• in reply to
Yes Roy Mucuna Twice a day.. I feel that when I take more than that at a time it brings on the dyskinesia.
park_bear• in reply to
MP comes in different concentrations.
Can you be more specific about MP? Are you taking pure dopa, extract, or whole bean powder? Thank you.
nutrivitashop.com/l-dopa-10...
Pure powder extract
Thank you. Are you taking a decarboxylase inhibitor with it for best absorption?
Sorry don't know what decarboxylase is. 😶
It acts like carbidopa. Since you take MP in a form of pure dopa, I believe you should add a natural form of "carbidopa." EGCG capsule will act like carbidopa.
Ok 👌. Where do you buy? Thank you.
Search on line for EGCG capsules. I buy mine on Amazon along with Quercetin/ with Bromelain to use with MP. Silvestrove (sp?) posted a lot of information on MP.
Thank you
1/4 tsp = 800 mg of levodopa. No wonder you're getting dyskinesia. That is a large dose at one time.
Thank you 😐 will shorten the dose in the a.m.
Thank Julie this advice has proven beneficial because lately I'm taking a little less mp and it keeps the dyskinesia at bay. 👍😊
This was of great help to me Julie, thank so much. I'm doing very well now,
I'm so glad I was able to help. It is very kind of you to acknowledge me.
well erniediaz well i think you should up it a bit to 2 grams i take mine in a flavored yogurt you dont notice it as much. i use mannitol as well just mix the 2 together,regards.
Did as you suggested 2g twice a day also Dr. C suggested likewise. In water is ok as long as I chase it with something. Sour 😩
I'm now capsulating and selling b1 hcl. I've been taking 4 grams a day since.
dr c. said (on his website) that thiamine should be taken with water with only.
As per Doc C the L-Dopa will no longer lead to DYSKINESIA.
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.
This is great 👍 I’m writing to Dr.C right now.
Although I have seen modest improvement from B1 (energy, I turn more easily in bed), it has not helped or diminished my dyskinesia. At one point I felt like it was making the dyskinesia worse, so I stopped for a time and then restarted at a lower dose.
Are you keeping in touch with Dr. C
I was. I haven't corresponded with him for a while now. He was pretty stumped by my situation.
How have you been doing as far as the dyskinesia?
I still struggle with dyskinesia. If it weren't for that I would be in relatively great shape, but overall my life is good.
I just started the treatment in consult with Dr C I am hoping it will help with Diphasic dyskinesia. Do we have a consensus regarding taking thiamine with or without food?
• in reply tohercules957
Initially it was thought that it needed to be taken before the meal, but during the meal is fine also.
Art
Have you found it helpful? Has it lessened your dyskinesia?
Yes B1 is helpful. It took away the apathy, the bradykinesia, it improved my mood and my motility. I did not see an effect on dyskinesia yet.
Hi Connie good question. I have cut back on the dosage of Mucuna (100% pure from nutrivita) pruriens and today as a matter of fact yes the dyskinesia was very minimal, one of my best days so far as far as dyskinesia.
Did you half the mucuna, thanks Ernie for responding! Glad it’s helping your dyskinesia !!
Amazing Dr.C wrote back already 🙃. I wrote him this morning stating my height weight and how I'm starting with 2g 2x a day and a short video walking back and forth. He replied keep doing that same dosage and keep me posted every week. Also send a list of medications which I take if any. Just did that. I'm am so grateful to you all and very motivated. 👏🏻😁👏🏻
Doing good on B1 so far. My energy level is through the roof as opposed to taking long naps all day and my dyskinesia has improved tremendously.
Here's the update. After taking 4 grams of B1 for three weeks now on day sixteen I ate eggs and pancakes for lunch and my dyskinesia was through the roof. But yesterday on day 17, my on time seems to have been extended by an hour and change and barely noticeable dyskinesia and today day 18 has been an even better day. I can actually sense the positive effects the B1 is having on keeping the dyskinesia at bay and extending my on time and relief of fatigue and increase of energy. I've actually felt like increasing the dosage in hope of getting even better results, but I'll wait to see what Dr C says, I'll write him tomorrow.
Hi Erniediaz- How much are you taking ? and when exactly do you take it - after 10 plus yrs on meds she has too much dyskinesia .. thx
B1? 2 grams in the morning about 8 am and 2 grams at about 3 pm or so.
I started her on B100 a few months ago .. which has all the B's
Not the same. Get in touch with Dr C, to get her on high dose B1
Wrote to Dr C yesterday, to ask if I could increase to 6 grams a day. He said continue with 4 grams for another 60 days and send him a pull test video whenever possible.
• in reply toErniediaz1018
Ernie,
Why do you want to increase to 6 grams? Are you having a problem at 4 grams?
Art
Erniediaz1018• in reply to
No just anxious to see more improvement, especially tremor. I’ve seen some improvements but expecting more, quicker.
• in reply toErniediaz1018
You gotta keep it real though, Ernie! People are reporting tremor improvement as one of the last benefits they are seeing and that is usually somewhere beyond 4 months. You're only a few days over one month. I have seen 19 B-1 users who have reported tremor improvement and I have written their names down to keep track. Dr C. has said that improvements continue to at least 6 months, but I have seen people reporting improvement beyond a year!
Art
Dear Erniediaz
The pull test, the UPDRS test , the videos of tremor are very important to determine the gradual changes of this therapy, unfortunately we PwPs produce little dooamine for which we are subject to daily highs and lows due to its assimilation; we often dramatize difficult moments but then we forget the improvements we have achieved, for which the test is very useful and the supervision of the doctor is necessary.
• in reply toErniediaz1018
I tried the 6g approach. Seemed to me that my symptoms began to return. Today I wonder if I gave it enough time. I then moved to 2g day, wasn't happy and returned to the Doctor's standard of 4g day. Satisfied now and like Doc's "He said continue with 4 grams for another 60 days..." I will follow your 6g post with interest in the outcome.
Erniediaz1018• in reply to
I didn’t increase. Dr C recommended I keep 4 grams for 60 more days
10 days ago - Get in touch with Dr C. High dose thiamine is going to help with all symptoms. My right leg is not freezing or dragging and cramping anymore after a month of 4 grams a day.
Posted 10 days ago - 21 days more or less before noticeable improvements. Usually take 2 grams about 8 am and 2 grams 3 pm.
Posted 9 days ago - I’m seeing better days ahead much less dyskinesia almost non existent bradykinesia or cramping and all thanks to Dr C and his team including everyone here. Love you all 😊
Posted 3 days ago - Right now I feel normal as if I don’t have Parkinson’s but when this mucuna+B1+herbs wear off I’ll start slowly twitching combined with tremor in right hand. I usually just wait till a bit later to take next dose because it doesn’t make any sense to take it if it’s not going to work anyway I also like to space it as far as possible from food. Yesterday though i dosed at 7:30am which worked great until 11:30am. Right then I took second dose and it worked great but only for like 2 hours.
Posted yesterday (Oct. 2). I visited my primary Dr today @5pm she said you're doing very well I don't see any tremor 😁. I wanted to tell her yes B1, but I don't think she'd understand.
By the way... Big time for me as it WAS the worst experience for me out of all the PD symptoms, I've been DYSKINESIA FREE for a couple of days now 😁.
Great news Ernie. Congratulations
Ernie, What's your current B1 dose ? Happy New Year !
Happy new year. 4 grams bulk powder from nutrivita. I'm 6'2" and weigh 200 lbs. I started at that amount and have done ok with it. No side effects. Started on my own first few days followed by speaking to Dr Costantini soon after who said stay at that amount.
Thanks, and I find it Interesting that you haven't had to alter the dose, as some of us had.
I've thought about upping the dose. But I'm doing ok for now. Just waiting for the six month mark, maybe tremor improvement (hopeful)
• in reply toErniediaz1018
Ernie,
If you ever decide to increase your dose of HDT, I would be very interested in knowing how that goes for you! I think Roy went up to 6 grams/day for a very short period, but I don't think he saw any improvement out of that dose boost?
Art
Erniediaz1018• in reply to
Yes I remember Roy mentioning his increase to 6 grams. I'll keep you posted, because come to think of it I think I'll add 1 gram to my third dose of ldopa which doesn't work that well and I'm under the impression now that it's because of no B1 in the mix. Thank you Art for flicking the switch for me, a light bulb just went on. Will try asap and will let you know 😊
Doing great!!!
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