My husband has been at what we thought was his optimal dosage of B1 for over a year. His only noticeable remaining symptom was in his left hand. He makes an opening and closing motion with his thumb and first finger. The other day, I noticed a slight swaying motion, as he was talking to me. I did a pull test, and he took 5-6 steps to recover. I asked him to stop B1 for one week, and then restart his dosage, but to skip 1 day's dosage each week. From what I have read here, I think that is what he should do next. I am reporting this newest change and open to any advice. Thanks!
B1 dosing change after a year : My husband... - Cure Parkinson's
B1 dosing change after a year
Written by
brikar
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30 Replies
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brikar,
Based on the information that Dr. Costantini has left with this forum, your plan sounds reasonable. I suggest taking comprehensive notes and videos starting immediately of how your husband currently is so you can document his issue('s) on video for later comparison to future videos at frequent intervals. Videoing the push test will be useful also as Dr. Costantini was always looking for a good push test in conjunction with good symptom relief as indicators of optimal dosing of B-1.
Quite a few members are reporting similar in the 6 month to 18 month of HDT/B-1 testing or use and so far a small reduction in dosing seems to be helping to normalize symptoms again. I've written a little bit about it here :
healthunlocked.com/parkinso...
Any and all input you can offer will help other forum members to work through this issue which is becoming quite common based on the increasing number of reports by forum members who have been on HDT/B-1 for many months.
Good luck and please keep us updated on your husbands progress by adding his results to the thread that I linked to in order to keep that important information in one searchable place !
Art
I will do another pull test in the morning and see how he does. Thank you for the response Art. I will update with anything that I notice.
Well, he did not take his Tuesday afternoon B1. Today, (Thursday) I did a pull test, and he took 2 steps back. His left hand is not doing the pinching motion, but there is a slight tremor. He seems to be back on track!
brikar,
I am very glad to hear it and thank you for updating!
This seems to be the simple remedy to put things back on track and your feedback helps to confirm this for other forum members who maybe experiencing similar issues!
Sadly, without Dr. Costantini available at this time and without scientific testing, this is where we are, trying to determine how to work through this issue. Fortunately Dr. C left us enough information to guide us through these changes that most HDT/B-1 users are starting to run into as months pass with B-1 usage. In the beginning a big issue was members overdosing on 4 grams and then the solution was figured out with Dr. C's input and then later we started to discover that some people need relatively lower doses of B-1, but since it is referred to as High Dose Thiamine (HDT) some members thought it was not possible that a dose under 3 grams per day could be effective. We soon learned that 2 grams a day could be effective for some people and then we learned that 1 gram per day could also be effective for some people and then finally we learned that 500 mg per day could work too, but there seemed to once again be a hangup at testing below that dose and finally the 500 mg barrier was broken through and it was then that we learned that 100 mg per day could be effective for some members, but once again, 100 mg per day became the new barrier that people just did not think it could be effective at such a relatively low dose compared to the 4,000 mg that was started with. Now the 100 mg per day barrier has also been broken through and we have learned that 25 mg per day is all that some people require to benefit from HDT/B-1!
Now we understand more about why some people start to see symptom increases after months of stability with B-1 and apparently, so far, it is not because B-1 is failing and the disease is progressing as some may have thought, but it appears more likely that a small dosage adjustment in a downward direction may just be all that is needed to resolve this issue!
Live and learn!
Art
I have found over my recovery time that i have a change in symptoms that a bit like a step up. Hard to describe but it like the changes are a step or improvement up. An example of this- i have long hair so when i wash it it is in my face and i have been able to smell it once wet- i think it the B1 -i had a big improvement recently and now i no longer smell this. I attirbute this -possibly- to the fact i absorbing more and not expelling it anymore also my pee does not smell .
Also to brikar- i have had a pointy finger for a little while too! My indicator if i late getting up for my dose is my trigger finger- it snaps repeatedly until B1 is consummed. I take as a powder and just rub into my gums it pretty instantaneous that way. I started to take as powder as dissolving didnt mask the taste and least this way it not so much as a drink! And it turns out it better way of taking it.
I also agree that as B1 gets a bit full on then a day off resettles the balance.
I should pay more attention to this. He started with powder, and then he switched to capsules when we were going on a trip. I don't think I could get him to go back. But, I am curious about what you wrote here. Might have to experiment a little here! Thanks for sharing!
🏅Rubbing B1 on gums for rapid response : genius😂
alaynedellow,
You are really exposing the very fine points of taking B-1 and I must admit I have never heard of rubbing the pure powder on your gums! You have taken the term "mini vacation" from B-1 usage to a new finer level also by reading your bodies reaction to it. All good points and tips for others on B-1 to consider! Thank you for the reply!
Art
And if it wasn't for this forum, I wouldn't have known about B1. (initially I bought the wrong B1! I wonder if others do that as well) I am thankful that I saw posts about taking a day off. I really am grateful for everyone's contributions on this forum. It was life changing for us!
Same here it shows the power of sharing. 🙏
You mention you initially bought the wrong B1.
I didn’t realize, until now, that there is more than one type of B1. My husband has been taking B1 Thiamine Mononitrate for 5 months. He started with 1.500 grams, but was experiencing sticky stools, so he reduced it to 1 gram per day (500mg am & 500mg at lunchtime). Stools no longer a problem, but no improvement with hand tremor yet on either dose.
Which B1 is the right one to take, in your opinion?
MCC950,
The correct B-1 for anyone who wants to test Dr. Costantini's HDT/ B-1 protocol is THIAMINE HCI OR THIAMINE HCL. HCI OR HCL is the same thing except that certain manufacturers choose to express the hydrochloride form as HCL or HCI depending on the manufacturer. Thiamine Mononitrate is one that Dr. Costantini absolutely "is not using" in his protocol! I believe that it is fat soluble and could buildup and cause problems!!! I don't know where you got the idea to use it? It sounds like it is not working for your husband anyway and such high dosage of a fat soluble form is not good.
Here is a product that many forum members have found effective and relatively inexpensive :
vitacost.com/vitacost-vitam...
I highly recommend that if you and your husband are going to seriously test Dr. Costantini's HDT/ B-1 protocol that you do some reading before starting so that you have an idea of what you are doing! What you are currently doing is a bad idea and is definitely not Dr. Costantini's protocol!
Here is a link to a post that I wrote which explains almost everything you need to know about Dr. Costantini's HDT/B-1 protocol as well as links to suppliers, members results on HDT, symptom improvements reported by members, 58 frequently asked questions about HDT/B-1 answered by Dr. Costantini and much more.
healthunlocked.com/parkinso...
You should also be aware that dosing for HDT is very individualized and one dose does definitely not fit all! What we have found on this forum over the past three years is that the effective dose that forum members have found to be effective for them varies from as low as 25 mg per day up to 4,000 mg per day! Again, one size does not fit all!
Art
Dear Art,
Thank you so much for all this amazing so well organized information. I can’t imagine how much work it took to put it all together. You have left nothing behind.
I’m terrified to think I been giving my husband the wrong B-1, which can be actually harmful. Our family doctor told us about it, but no one told us it had to be a special form. I just grabbed the first one I could find. I had a horrible time finding a 500 mg dose.
Yesterday, we went for a second opinion to a movement specialist, who told us to slowly taper off from the Rasageline he has been taking, that our first neurologist prescribed. She saw no great benefit in taking it, so today we started tapering off of it. I hate to stop two meds at the same time, but I’m so afraid to continue with the wrong B1 and am very anxious to start the B-1 HCL. Any suggestion to how much Vit. B-1 HCL we should start with?
This information is life saving.
I can’t thank you enough.
MCC950,
Regarding the thiamine mononitrate, you should ask his doctor about the best way to stop taking it, but you probably don't want to let any grass grow under your feet towards that end.
The critical component that is missing from the information in those HDT pages is Dr. Costantini! His knowledge and practical experience with HDT/B-1 in conjunction with standard PD meds was unparalleled and invaluable!
If you continue reading through those links, you will see a page where forum members discuss how much B-1 they are taking and how they are attempting to adjust their dosing. Dosing can be a really hard part of using HDT, finding the right dose for each individual and when it comes to HDT/B-1 the dosing is very individualized!
I am not a doctor, so I can not tell anyone what dose of anything to take. Generally, Dr. Costantini used a minimum of three (3) criteria to help give him an idea of a proper starting dose for each of his patients. The first consideration was length of time since diagnosis where the longer the time lapse, the higher the dose he might start the patient with. The second consideration was the severity of symptoms with the more severe the symptoms the higher the dose. A third consideration was the physical size of the patient with the larger the patient, the higher the dose he might recommend. Lastly he would also use the "push test" and with a poor push test, again he might consider a higher dose.
About 2 1/2 to 3 years ago on this forum before we were in regular contact with Dr. C, it was thought that 4,000mg per day was an effective starting dose, but forum members who initially saw some symptom improvement at that dose soon started seeing a worsening of symptoms and in some cases the symptoms worsened to a "worst ever" level. We now know that this was a clear indication of B-1 overdose. Dr. C said that the correct dose of B-1 should only result in symptom improvement and definitely not a worsening of symptoms! We also now know from important member feedback that 25 mg day is the lowest effective dose of B-1 to date. All valuable information as long as it doesn't get lost!
Dr. C's preference was to work from high to low dosing although he was not opposed to going from low to high. Going from low to high generally takes longer than going from high to low. I can only speculate that part of the reason Dr. C would go from high to low to low is because if he went too high, it likely would increase your chances to temporarily see benefit as quickly as possible and this is a very important aspect of HDT. Some people respond to HDT on their very first dose while others have reported taking up to 7 months to see their very first symptom improvement, making it very difficult to stick with a protocol that shows no benefit for up to 7 months. If a person was a quick responder to B-1 and the dose was too high, that person would likely notice a brief improvement in symptoms followed by a worsening of symptoms indicating a dose that is too high. Too much B-1 can cause a temporary increase in symptoms and in such a case, Dr. C would have the patient stop B-1 for a few days to a week or so. Taking meticulous notes and videos during the testing process can be very useful in helping to determine an optimal dose. After stopping B-1 due to overdose, seeing how long it takes for the worsened symptoms to start reversing is important. The sooner the worsened symptoms start to improve, the closer Dr. C thought you were to your ideal dose, but currently on the high side. The longer it takes to see the worsened symptoms improve, the further he thought you were from your ideal dose or in other words, you were likely way overdosed in which case he would have the patient halve their dose after the stoppage period and then see how the patient responded at the new lower dose. From there it was repeat as needed with many push tests thrown in for good measure and to try and fine tune the dose as much as possible. Good luck!
Art
That's what I did! So glad that sharing that helped someone else to find the correct B1.
Absolutely,
I’m so glad you did. I was afraid to ask, but it immediately raised a red flag. I’m learning to never to be afraid to ask, no matter how ridiculous you sound. We are still so new to this and don’t know enough about it to know how to navigate through it.
Thank you, brikar
That’s interesting. I sway. I have been on B1 for 18 months and take a week break every month.
His sway was a brand new symptom. After starting B1, other than the tremor, he didn't have visible symptoms. He also was diagnosed very early in the disease and started B1 early on as well. Everyone's situation is different.
Hi, all... I’ve been following the HDT protocol for a few months now. I’ve read in many posts about the need to reduce dosage When the PD symptoms increase when the PD symptoms increase. I’ve done it myself a few times--I started out at 2 grams per day and I’m now at 200 mg per day.
My question is how do you know If it’s time to increase dosage? What would be the symptoms?
Grateful for the wisdom of this crowd...
I hope someone more knowledgeable will reply to this, but I think that once you have found your correct dose, you shouldn't have to increase it. At this point, you have stopped progression. Hopefully, that's how it goes anyway!
Two things that Dr. C always looked at in an effort to determine an optimal dose was a good "push test" and a reduction of existing symptoms. Do you currently have those two features? You can have one without the other, but when you have both you know you are either at your optimal dose or very close to it.
Art
Thanks Art.
No I can’t pass a push test just yet. And as far as a reduction of existing symptoms goes, it’s subtle. Compared to the loss of function I experienced at the 2 g per day dose, though, I am much improved. But I don’t feel much better than I was earlier this year before HDT.
No worse, though. So that’s good.
I’m thinking I’m going to add another hundred milligrams per day for a while.
Grateful for all y’all...
Julie
Please excuse my ignorance but what is a "Push test""?
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