Reducing B1 after 18 months - Parkinson's Movement

Parkinson's Movement
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Reducing B1 after 18 months

Dap1948
Dap1948

I'm writing this post for someone who has used this site for a long time but who has now lost his sight and can no longer see to type. He has been on B1 for 18 months but has suddenly got worse and so is now reducing his injections. He wants to know how long it has taken before people feel better again on a reduced dose and what percentage they have reduced to. I'm hoping someone can help. I will read out all answers to him. Thank you

30 Replies
oldestnewest

So sorry to hear that.

How old is he?

Was his sight deteriorating?

Is B-1 the only supplement he is taking?

When was he diagnosed?

From your question, it seems he feels his sudden worsening is connected to be 1 injections?

How long ago did it symptoms suddenly worsen -- and have they ever worsened and then improved previously?

I don't have personal experience with what you're asking, but from reading most of the posts, it looks to me like most experienced improvement pretty quickly.

Dap1948
Dap1948
in reply to MBAnderson

He's had a wonderful 18 months with huge improvements, then suddenly symptoms returned.

Dap1948,

I have been writing about this on the forum recently since Roy recently reported similar. Here is a copy of a reply I made today that pretty much explains Dr. Costantini's thoughts on this process. Here are two replies, one to that post as well as my reply to Roy which might explain why this is happening to more and more members as they surpass at least 7 months of HDT daily use.

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chartist

6 hours ago

Dr. Costantini initially checked his patients before starting on HDT for their serum level of thiamine and these tests showed normal levels. After starting them on HDT, their serum levels were off the chart. His theory was that a perturbed thiamine transport mechanism may be a contributing factor that was not allowing enough thiamine to reach the brain even though serum levels were in range. It is established that insufficient thiamine in the brain is neuroinflammatory, neurodegenerative and this inflammation would also cause increased reactive oxygen species as well as other radicals that create a vicious cycle where the increased inflammation and radicals would feed off of each other damaging dopamine producing neurons as well as other cells in the brain. He felt that by administering high doses of thiamine, it could potentially compensate for the perturbed transport mechanism and get enough thiamine to the brain to ameliorate the deficiency in the brain, thus lowering the inflammatory state as well as the increased reactive oxygen species and other radicals to break or reduce that vicious cycle and allow cells to be repaired. It is all theory of course and I remain doubtful that we will learn all of the actual mechanisms of action involved with the addition of HDT in our lifetimes.

Some of the first testers of HDT started at 4 grams/day and saw initial improvement of symptoms followed by a worsening of symptoms and some who continued at the 4 grams also saw "new symptoms" not previously seen and then stopped taking HDT out of fear that these new symptoms would remain even if the HDT was discontinued and it does not seem that any PWP is going to continue taking HDT if they are seeing a steady worsening of existing symptoms as well as new symptoms not previously seen before. Dr. Costantini felt that if you saw a worsening of symptoms, then he considered you were a B-1 responder, but the dose was just too high.

Another thought is that as time has passed on this forum, some testers and users of HDT are starting to report that their symptoms are starting to worsen after many months or years of use and what these users are finding out is that a dose reduction is needed in order to return to the state they were used to from regular HDT use. Dr. Costantini was of the opinion that this aspect of HDT therapy was caused because of increased cellular repair due to reduced inflammation and oxidative stress in the brain that was essentially decreasing the demand for thiamine by the body and brain. Too much thiamine for B-1 responders has consistently shown an increase of PD symptoms. The current response range reported by forum members is as low as 25 mg/day up to 4,000 mg/day. Quite a range!

In other neurodegenerative diseases that Dr. Costantini also treated at his office with HDT, he found that higher doses than 4 grams of HDT were required in order to see symptom improvement.

Art

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chartist

22 days ago

Roy,

You are one in a growing list of members who are seeing a worsening of symptoms after months or years of HDT usage. Some are interpreting this as a progression of the disease itself and are fearful that HDT may be failing them, but Dr. Costantini felt quite differently on this subject.

Dr. C was well aware of the fact that insufficient thiamine in the brain would cause neuroinflammation which feeds the disease process further. He also knew that eliminating this deficit by using high doses of thiamine could help to reduce the chronic neuroinflammation as well as reduce symptoms.

Dr Costantini also felt that thiamine was repairing some cells at these higher dosing levels and combined with the reduced neuroinflammation as a result of the HDT, he felt it was possible that in time the dose that was previously your optimum dose may no longer be your optimal dose as the cellular repair and reduced neuroinflammation may equate to a reduced need for thiamine! Obviously if he is correct, it would likely take months to years to see this "new worsening of symptoms". His solution to this problem was to lower the current dose very slightly.

Kia17 was one of the first to report such an instance of being stable for more than a year with very good symptom control when he suddenly became aware of a worsening of symptoms out of the blue. Dr Costantini's answer to this problem was to tell Kia to stop HDT for awhile and then restart at the same dose he had been taking, but this time, skip a dose for one day of the week and just pick a day that would be easy to remember. That put Kia back on track with such a small dosage change when you figure that out by seven days, but that is all it took!

It is just a guess on my part, but I have a feeling this problem will begin to surface more as people surpass the 7 month to 18 month of being on HDT. A further guess on my part is that this can possibly happen more than once over a long enough time on HDT. You may ask why and my answer to that is just a guess.

I think that if Dr. C is correct about the whole idea of reduced neuroinflammation and thiamine repairing certain cells, the reduced neuroinflammation which is also likely to lower the total brain oxidative stress level, in combination with thiamine repairing certain cells, creates an environment where the brain is possibly in a better place to effect repairs of its own and in so doing, lowers the body and brains need for thiamine which basically creates a situation where there is now more thiamine available than is needed! One thing we have learned with HDT is that too much B-1 creates a worsening of symptoms and the answer to that problem is that the dose needs to be lowered or at least that is Dr. C's thinking on the subject.

Roy, the fact that you felt a possible improvement quickly after reducing your dose is a direct play from Dr. C's playbook! This reaction tells him that you were very close to your ideal dose, but a bit on the high side and I suspect that other forum members using HDT will soon see similar.

These are all insights that Dr. C shared with our forum for the time that he was able to be with us! Thank you for all of it, Antonio and I continue to pray for the best recovery possible for you!

Art

MBAnderson
MBAnderson
in reply to chartist

Thank you, thank you.

Thank you for this I formation. My PD husband started shots almost 3 months ago. No improvement yet. Symptoms if anything are worse. We will continue f ok r another couple of weeks and then seek out information on dose reduction we have a way forward. Thank you

Is your husband taking any PD meds? If not the B1 alone may not work. I talk on my personal experience. Did not worked for me without meds ( I did injections for almost 1 year). Worked since the 1st shot when I tried again 2 years later in combo with a classic PD meds.

Dap1948
Dap1948
in reply to chartist

Thank you Art. He just wanted to know how quickly people had felt improvement on reducing. He's reduced his injections but not found any improvement yet. How much have people reduced to get an improvement? I hoped/am hoping that people might write in with personal examples.

chartist
chartist
in reply to Dap1948

Dap1948,

Kia and Roy are examples. Kia's reduction is in what I wrote above and it was fairly small. Roy's reduction is outlined in his post here, but I think is incomplete at this point :

healthunlocked.com/parkinso...

Roy took a fairly large dose reduction and then saw symptom relief fairly quickly. You will have to check with him for updates on how he is doing.

I do not know enough about the injections to have an idea of what type of dose reduction might be needed, but it would be very good for your friend to verbally record his experience (notes) once he starts his break from B-1 injections. According to Dr. Costantini, at 18 months of HDT for your friend, he could be in an area where Dr. C suggested that some of his patients could take an extended vacation from HDT and that may be the case for your friend. Gio has previously mentioned Dr. C had suggested that he could take mini breaks from HDT as in days as opposed to weeks or months and this may be a possibility for your friend with no dose reduction, just one of Dr. C's mini breaks every so often.

Good luck to both of you and please keep us posted on your friends testing!

Art

chartist
chartist
in reply to chartist

I was just reviewing the Thiamine/HDT/ FAQ page and came across one FAQ that I had forgotten about and that is a good reason to have the HDT FAQ page readily available so you can review it every now and again to refresh our memories of all of the HDT information that Dr. C passed along to us.

This Q&A is # 9 and it clearly pertains to the thiamine overdose situation that multiple forum members are reporting in the 7 month to 18 month of continuous HDT.

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9. If I miss a dose or a day of thiamine, will my PD symptoms come right back?

A: No. If a patients misses one day or so of thiamine treatment there will not be any consequence. Once the patient is stabilized, after three or six months, we usually suggest short breaks of one to two weeks without thiamine. Some patients suspended the high dose thiamine treatment and the symptoms of the disease came back after two-three months; thus, these patients restarted the high dose thiamine therapy as before and, like before, the symptoms disappeared again.

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Just following this suggestion by Dr. Costantini will likely prevent the B-1 overdose symptoms that members are starting to report with regularity in the 7 to 18 month time period of regular HDT use. The break may only be for a week or a few days depending on the individual, but such a break will clearly show if you are experiencing B-1 overdose because the overdose symptoms will decrease during the break. Here is a link to the HDT FAQ page which might be worth bookmarking for anyone who is using or testing HDT/B-1.

healthunlocked.com/parkinso...

Art

Dap1948
Dap1948
in reply to chartist

Many thanks

I’ve been doing well on the same exact dose of 1 gram. I’m very newly diagnosed and had great results for about 7 months. Out of the blue, I had a worsening of symptoms with no change of my supplements or drugs,I took 1 day off and felt better. Maybe I will skip a day of the week because it’s

Hard to lower my dose on such a small dose. (On 500 mg doses) I’ve thought “is there some healing taking place?”

My Coimbra Protocol doc thinks yes. I dunno, by don’t want my hopes dashed when I am finally coming to terms with the crap I got.

38yroldmale,

You are an HDT responder and that all by itself is huge, embrace it, as according to Dr. Costantini it likely means a very significant slowing or halting of disease progression for at least 7 years which was his clinical experience!

You are describing what other forum members are starting to see also and Dr. C. dealt with this issue with slight dose reductions such as skipping one or two days per week. A little experimenting on your part may be able to zero in on the dose you are looking for. Read my reply by scrolling up in this post for one possible explanation of why you may need a dose adjustment based on Dr. Costantini's information.

Your information will be very helpful for other forum members who are just coming into to that 6 to 18 month area where a dosing adjustment may be needed so please keep us updated on what you find with your testing!

Art

M1tz1
M1tz1
in reply to chartist

I join in those prayers.

Hi daphne, i take capsules. I found symptoms eased quite quick after stopping but i also choose to break for extra 2 weeks to get my levels flat again n then restarted on lower dose. I had started on high dose but have found my xorrect dose to be just 175mg a day.

It took me over a year to get it right when on large dose i feel i was very overdosed hence break to flush it out. No science behind it just me understanding my body n how it reacted. Hope this helps

Thiamine alone was never going to be the answer. One needs a more "rounded" therapy to slow the disease. I do not have Parkinson's but rather SCA1, but I believe the underlying pathology is the same, namely mis-folded proteins in the brain. Therefore, I humbly offer my COMPLETE therapy as an alternative. The point here is I believe strongly my therapy only works when taken in it's entirety. One can not "pick and choose".

healthunlocked.com/ataxia-u....

Is it possible that people are getting deficient on other vitamin B's while mega dosing on B1? This may also explain why supplement hiatus may help.

While high dosing on one B vitamin, it's imperative that you are supplementing with well balanced B complex away from the one you're mega-dosing since they compete for absorption. One should at least supplement B6 (take p5p form not the common pyridoxine hcl) that can be deactivated by B1 through pyridoxal kinase, B12, folate, B5, biotin, etc., and definitely take magnesium since it's a required co-factor. Adding organic non-fortified nutritional yeast with meals is another good idea.

chartist
chartist
in reply to rescuema

rescuema,

I think you may be right in some cases because there was a forum member about 2 years ago who reported that they got B-1 overdose symptoms and by adding a vitamin B multi, they were able to put those symptoms in check.

Shortly after that post, another forum member mentioned B-1 overdose symptoms and said that they had tried adding a B vitamin multi and had no benefit from it in terms of B-1 overdose symptom relief.

With Dr. Costantini's office patients, he sometimes suggested the use of a B vitamin multi or small amounts of individual B vitamins, but would occasionally suggest a magnesium multi as magnesium in the right forms and amounts can have synergy with thiamine by helping the conversion to its active form and many many studies have confirmed that the right forms of magnesium can be beneficial in multiple ways for PWP's as outlined in the following links:

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

Art

I'm just echoing what a couple of other people on this post have said. I don't know anything about B1 specifically. However, I started taking a daily B complex years before I developed PD symptoms, and in reading about that, I learned that care should be taken with all the B vitamins, as several of them (I don't remember specifically which ones) can cause neurologic problems if taken in too high a dosage. B1 could be one of those. Other advice that I read was that it is better to take the whole complex instead of just one B vitamin because taking just one can, in some instances, cause a deficiency of others. However, I would be very hesitant to take a large dose of the whole complex. That might overwhelm the entire nervous system.

How I wish that all doctors were attuned to nutritional therapy and that they would do extensive and on-going testing into what each one of us needs as an individual.

Dap1948
Dap1948
in reply to HeartSong

You have just thrown out the high dose thiamine protocol which has worked splendidly for hundreds of people! B1 In high doses does not cause neurologic problems!

Dap1948, it was not my intention to throw out the high dose thiamine protocol, and I'm sorry if I came across like that. With several people on this post mentioning that some people have felt worse after successfully taking the the high dose protocol for awhile and some even developing new symptoms, I thought it worth mentioning what I had read. Again, I apologize, and I don't want to shake anyone's confidence in something that is helping them.

rescuema
rescuema
in reply to HeartSong

You have a good hunch and I believe you have read about the pyridoxine hcl regarding the nerve toxicity, which is why I was recommending p5p active coenzyme form of B6. Most B vitamins are water soluble and shouldn't cause problem with high dosage except when one interferes with absorption of others.

Thiamine at very high dosage should generally be well tolerated and unlikely to cause serious symptoms, but no one could really predict the long term consequences of a high intake without examining the individual's diet trend, gut microbiome (eg. candida albicans produce thiaminase that breakdown thaimine while other beneficial gut bacteria provide helpful B vitamins), and differing genetic makeup that can compromise certain vitamin absorption and activation - recent development in epigenetics show some mistakes in DNA attribute to this.

As an insurance, when supplementing with other B complex (more natural the better), it's best to divide the dosage (split pills) and take more frequently away from B1 to help with the absorption.

It's also a good idea to make a list of all B vitamins and trace minerals for any noticed deficiency symptoms to stay proactive with your health trend.

HeartSong
HeartSong
in reply to rescuema

Rescuema, thanks. You sound like you know a lot about B vitamins, so I'll pose a question to you I've been searching for an answer to for some time. I take a daily B complex 50 vitamin, but it is synthetic. I would very much like to take a natural form of B complex, but I can find one. Are you aware of any? (I live in the U.S.) Thanks.

rescuema
rescuema
in reply to HeartSong

Natural forms are unfortified nutritional yeast (organic preferred), bee pollen, organ meats (esp liver), etc.

See here for other natural B sources

medicalnewstoday.com/articl...

HeartSong
HeartSong
in reply to rescuema

Thanks, rescuema, this is a good list.

Hi, Dap1948,

I was wondering if you have any update on how the forum member you were discussing has done as far as adjusting his dose? Generally, it sounds like taking a mini B-1 vacation every two or three months in the form of a complete stop of B-1 for a week to a month depending on how the person responds during the time off, may be all that is needed to keep B-1 in a more desirable range where overdose does not occur. This would mean no dosage change at all, just the regular mini vacations as suggested by Dr. C. This would be one way that Dr. Costantini chose to deal with this issue, but more feedback, especially with patients who are using Intramuscular (IM) B-1 dosing, could definitely help to clarify this issue for other members who will certainly be reaching a similar point in their HDT therapy soon enough!

Apparently Dr. Costantini felt that the mini vacation would show if the dose was too high because with the complete stoppage of B-1 oral or IM, the worsening symptoms would improve and then ultimately return if the vacation went too long. It would be up to the patient to decide if the vacation should end or continue based on their response to the B-1 stoppage. If symptoms started to improve after stopping and then started to worsen again, then the vacation was likely a bit too long, but that first vacation would likely give a clue to how long the next vacations should be. Dr. Costantini used to say something along the line of nobody using HDT/B-1 dies if they decide to stop B-1 for a short length of time.

Thank you!

Art

Dap1948
Dap1948
in reply to chartist

My friend, who is on B1 injections twice a week, decided to reduce his dosage gradually. Pain is his monitoring symptom. He is down to half his previous dose currently and has almost eliminated the pain once more.

I on the other hand, taking sublingual B1, decided to take a holiday. Tension, anxiety and tiredness are my monitoring symptoms. Overdosing gives me tension and anxiety, underdosing gives me tiredness. It took five days without B1 before I felt tired. I restarted at a very slightly reduced dose and in two weeks felt over dosed again. As it had taken three days to recover from my previous five day break I took a much shorter break this time and restarted at a much reduced amount. My sublingual tablets are 100mg and cutting them is difficult as they crumble so I do patterns of days on and days off, calculating what that would average out per day. Originally in 2017 I took 100mg per day. I tried capsules in 2018 but never found the right dose so returned to sublingual at the beginning of 2019. I took 100mg per day but soon realised it was now too much. I settled on 60 mg per day by taking 3 tablets over five days, a dose I've been on for eight months or more, I first reduced this last month to 57 mg by taking four tablets over seven days but as it produced a return of the overdose symptoms after just two weeks, am now trying 50 mg - a tablet every other day.

chartist
chartist
in reply to Dap1948

Dap1948,

I am very happy to hear that both of you are zeroing in on your new lower doses! Very useful feedback! Thank you!

Art

AmyLindy
AmyLindy
in reply to Dap1948

Wow... Curious @Dap1948, Who helps you two with your injection and sublingual protocols? Progressive neurologist? Are you now pretty much self-directed? Sounds like you’ve mastered it...

Dap1948
Dap1948
in reply to AmyLindy

I began the sublingual tablets before we had email contact with Dr C. I have kept meticulous diary notes on good and bad symptoms so that I could analyse which hinted at over- and which under-dose. If you work with a neurologist they will only advise you based on your feelings and reports about symptoms. Apart from the pull test, which was always fine with me, there's no other visible, quantitative, universal assessment. It's down to you!

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