Is it my imagination or is a trend developing in which people are reducing their dose of B1 after several months of a dose which initially seemed "right"?
Reduced B1 Dose: Is it my imagination or is... - Cure Parkinson's
Reduced B1 Dose
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jimcaster
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I had to back off a little bit. Thinking it takes several months for the original, loading dose to become effective, after which a lower maintenance dose is more appropriate.
I am a courageous sort. ExMarine for goodness sake. When it comes to pills, I have known to soil my khakis.
Given that, last week I took 2g x 2 doses of Thiamine daily.
I stopped. I didn’t feel too great.
Yes, that was my cowardice speaking.
My plan is to see my neurologist on Friday. The one I see annually.
Your splendid thoughts, Please.
Fredzu
Doctors are propagandized to believe that supplements can do no good and prescription medications can do no harm. At best I would expect your neurologist to be neutral on the subject, or he might dismiss it as worthless.
As to dosage, generally speaking, if you are having adverse effects the procedure is to take a week off and then resume at a lower dosage. It is recommended that you consult with Doctor Costantini. In what way did the vitamin B1 cause you to feel not so good?
Jim,
Apparently the dose was never right, only close. Here is Q&A #2 & #18 on the thiamine FAQ page:
2. Does the dose stay the same or does it have to be adjusted up or down over time?
A: Initially it is possible that the dose is to be adjusted based on the patient’s response to the treatment. Once the right dose has been found, such dosage should not be changed and it should be always effective. The “right dose” is found when the disturbed balance is suppressed and the patient regains normal balance. In other words, the right dose is the one which normalizes the pull-test. On the basis of our observations, the right dose is the one which suppresses the majority of the non-motor symptoms and at least 50% of the motor symptoms. The right dose does not cause “over dosage symptoms” (see further questions for more information on this point).
18. What are the symptoms if my thiamine dose is too high or too low?
A: If the dose is too high, rarely but sometimes it has happened, can determine the worsening of the symptoms of PD. Sometimes after an initial improvement, if the dose is too high, some symptoms that had disappeared may manifest again. The therapy with high dose thiamine has to lead only to positive effects, if any negative effect is observed by the patient this means that the dose is to be adjusted. A dose that is too low does not lead to any beneficial effect on the symptoms of PD.
Keep in mind that Kia had been very close to a correct dose for well over a year and then had a sudden worsening of his symptoms that Dr. C had to correct, by keeping the daily dose the same but eliminating one day of dosing per week and just like that, back to normal!
Art
jimcaster in reply to
Thanks, Art. I saw those Q&A answers, too, but I'm still intrigued by what I perceive as a trend....
blog.parkinsonsrecovery.com...
The above link about methylation cycle and thiamine might provide some answers. The last sentence of the article provides some insight.
Thanks for sharing! I have read that article before, but totally missed the last sentence. It seems to contradict what Dr. Costantini has said, but I hope it's true. It's actually what I have been hoping -- that lower doses are appropriate because we are actually getting better! That may seem fanciful, but everything about this disease seems shrouded in mystery...
in reply to jimcaster
Jim, I would agree and would think it will continue as more people are on the HDT protocol for longer periods of months, more reports of the dose not being exactly the right amount for the individual seems likely to occur. That fine tuning process continues until all of the negative events are tuned out completely and do not return. Frustrating, to be sure, but needed steps in order for some people to find their exact dose.
Art
jimcaster in reply to
I agree, although I also like to believe Robert Rodgers, who says B1 improves methylation and "Once the methylation cycle becomes fully functional, a high dose of B vitamins should no longer be required or necessary." See Parkie13's reply above.
I expect to take high doses of thiamine for the rest of my life, but it seems logical that if we are actually improving, we may not need quite as much. Even if that's completely wrong, it gives me hope until proven otherwise. 😊
This is the biochemical aspect of the processes activated by b1, there are others well known as the energy aspect for example, much used by climbers who take the b1 with glucose because you can not stop on the wall. This energetic aspect is well documented on the web. B1 has improved my chronic fatigue. And what about the effects on organs such as intestinal disorders, or improved bladder and some undesirable effect of high doses that requires attention.Therefore not all aspects of b1 are explained.For each discipline exists the theory of why it works and the practical use and only the latter based on the results gives the certainty that it works which is a knowledge that goes beyond data, but it takes some personal practice and supervision. This is my experience. No one until now has given an effective blow to these diseases.
if the b1 slow down the progression? only time will tell. The expectation is positive in my case, but I have my own certainty and I can not pass it to others with words. It takes practice, supervision and personal results, and it's not easy.
Kia17 in reply to
Art
Dr Costantini has also recently reduced my daily intake of Sinemet to half. Now ,I am taking 25 mg x3 times instead of 50mg x 3 times a day and like you said the Thiamine from 7 days a week to 6 days and I am well responding to the tweak. He believes that as a result of his treatment my Dopaminergic cells have been restored and I would need less Thiamine and Levodopa.
in reply to Kia17
Kia,
That is just as he said it could be, where once the correct B-1 dose was achieved, there is the potential to lower the sinemet / levodopa dose. Usually it is the other way around, where as the disease progresses the sinemet dose has to consistently be increased until even the highest dose is no longer effective or fully effective, so you are further confirmation that he is correct about the sinemet dose reduction potential of HDT! He outlined this clearly on the B-1 Faq page as Q&A # 51!
Btw, Kia, I am very happy to hear that HDT is working so well for you and you are getting the benefits implied by this protocol!
Art
For me what matters is to continue using it, and more than the highs and lows , the overall neurological picture counts over time.
Each has its PD stage due to the gravity of the different brain injury for each of us and therefore everyone has a different response even to drugs.
Progression is another thing.
B1 is a vitamin, a substance also contained in food , and works better in a diet without deficiencies of other vitamins and minerals. I take B1 IM injections, the dosage is easier because there are fewer variables to consider.
B1 has an important role in activating energy processes, in the formation of many enzymes, but it can not do everything, a good physical and nutritional lifestyle including the use of ldopa as advised by ours doctors is necessary.
PD is a bad disease with devastating consequences better trying to avoid them, it is a tough fight requires discipline, perseverance, courage and good applied medical technology.
Take care to your self. Nobody will do it better than you.
It is my observation that new users are starting at very low dose. They are fearful of vitamin dose recommended by the good doctor. They do not give enough time for it, correct dose, to work. They quickly blame thiamine hcl for anything.
jimcaster in reply to
Roy, I'm thinking of several of us who have been on B1 for several months who started at 3 or 4 grams per day and are now down to 1 or 2. Fortunately, within that group, there seems to be universal belief that B1 is very helpful, but not necessarily at the same dose which originally seemed perfect.
JAS9 in reply to
I think that Dr C has been recommending a lower dose to many who send him their information. Everyone should contact Dr C if they haven't already to work on the correct dose by providing feedback to him and doing exactly as he says. That seems to be leading to lower doses for many of those on this forum. So be it.
I’m curious as to whether those on oral dosage vs injectable b1 have the same side effects. Since it’s absorbed differently is it broken down differently too? I wonder if those experiencing leg/back pain after many months are on oral b1. Maybe there is no difference.
Good question. Gio raised a good point about the interaction between diet and taking B1 orally. Maybe we are improving our B1 intake naturally though better diet, thus slightly lessening the need for supplementation. Just a thought... In any case, I'm still taking 1 to 1.5 grams per day and I'm still a believer...
That is a great point Gio made! Diet is very important !! Yes B1 is helpful, no doubt!😊
in reply to jimcaster
Another thing to consider, Jim is that improved gut motility and improved gut permeability caused by the longer term use of HDT through its antioxidant qualities may be causing improved natural production of thiamine in the gut, effectively raising your total B-1 dose inadvertently and causing the overdose situation at a dose that previously seemed perfect. Something like that would happen slowly as gut health improves with continued HDT. Thiamine is naturally produced in the gut through normal bacterial interaction, but this process declines with disease progression in the perturbed gut biome of PWPs. Many report an elimination of constipation and other gut issues once started on HDT suggesting an improved gut microbiome environment which would likely be more conducive to improved gut function and with that likely improved thiamine production in the gut. Just a theory, but it seems plausible under the circumstances.
Art
jimcaster in reply to
Great thought, Art! That is very plausible. I just love the idea that some how, some way, we might actually be healing. I truly feel better now than when I was diagnosed.
in reply to jimcaster
I'm very glad to hear that, Jim! That is #59 on the list of 80 symptom improvements!
I had been wondering how you are doing because I don't see every post on this forum and I sometimes miss updates, so that is good to hear!
Wouldn't it be interesting if this improved gut environment theory of potential natural thiamine production is correct and it turns out the people who have to adjust their dose the most because of continuing gut environment improvement are going to be the ones to see the greatest symptom improvements in the long term?
Art
jujulini in reply to
art-
is there a set time that dose is assessed before deciding to reduce it? 2 wks, 4 wks, more? i dont remember seeing that anywhere?
in reply to jujulini
No set times. Just a matter of reviewing reaction to the current dose and reporting changes as they occur. People definitely respond at different rates to HDT and that is why there are no set times in terms of response. As an example of this, look at Ernie who felt he started to respond to HDT oral dosing after only a few hours of his first dose and then compare that to MBAnderson who took about 8 months to see his first measurable improvement!
Art
jim - i believe that are bodies are capable of healing - even chronic diseases. i use homeopathy, and their philosophy is based on "herrings principles of cure", some of which are - all cure starts from within out, (the mental and emotional symptoms before the physical), from the most important organs (the brain) to the least important (the skin), from the head downward, and in reverse order as the symptoms have appeared or been suppressed".
i have noticed that with myself - my mental and emotional issues have improved first, and then some of the more recent physical symptoms. i attribute all of my improvements to homeopathy, mannitol and thiamine.
hi Connie,
With the injections it's all simpler, but the results are similar but less difficult to obtain and the relationship causes an effect on the disease is more evident to me. I saw it just yesterday, it was almost a month that I took the oral pills because my wife had injured shoulder and thought to go well with these bitter pills of b1. But then I received an injection (100 mg thiamine hcl intramuscular in the buttock) over the span of two hours I changed the posture and facial expression as the first time. Excuse me if I say it: something to be incredible nice. The pills are fine the same over time, but they do not give you this immediate effect that makes you say: WORKS!
Thanks Gio!! I’ve been wanting to try the injections, I’d like to see if I could have even better results ! Sounds like an easier way and possibly more noticeable improvement !!!😊☘️
I started 2g/day, went down 1g/day and up again to 2g/day last week to keep my symptoms at minimum.
Good morning jim,
I have noticed the same trend and I will now apply it to myself.
I first started B1 pills on 2.5g per day and it worked well at that dose, much improving most symptoms, esp. leg and hand pain, stiffness, terrible fatigue etc. tremor was only a minor problem then and didn't bother me. Dr C told me to up the dose to 4g. I went progressively to 3.5g with further improvements and stayed there pretty stable for 6 months. 3 weeks ago, without changing the dose symptoms came back with a bang, along with strong tremor and weakness in the left hand. At first I put this down to PD progression and I upped the B1 to 4g/day. ERROR ! Symptoms just got worse. I am now into the 5th day of a PILL STOP. No pills at all. Symptoms declined steadily over three days and I'm now back to the best days of mid June. No pain, no stiffness, very minor tremor. I will stay on this pill stop until I detect that I need to build up my bodily stock of B1 again. It this takes a long time I will make a major reduction in my B1 intake. The half life of B1 in tissue is between 10 and 20 days, so I'll be guided by that.
Conclusion : by keeping on the same B1 dose for months I eventually reached saturation and long-term B1 overdose.
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