B1 trial

[Sanay]

My husband started with 1g of B1/ day and noticed some improvements especially during hus off times within 2-3 days.

After 10-12 days his dyskinesia suddenly increased to the point that he couldn't sit still when on medications. So we immediately stopped B1 and after 5 days he got to normal again. At this time we didnt realise it was because of B1.

So after a week we started with 500mg, continued for another week and then increased to 600mg but there were no marked improvements and he missed the improvements he experienced when he was on 1g ( he was able to workout in his off times treadmill, cardio,cycling) and so we again jumped to 1g and immediately started noticing the improvements within a day or two. All was good for 10 days but again his dyskinesia increased and we had to stop it immediately and the dyskinesia subsided after 4-5 days.

So now it was clear that it was due to B1.

Are these signs of overdosing? Is 1g too much for him? He has improved off times at 1g but increased dyskinesia. However B1 is supposed to reduce dyskinesia and not increase if this is the ideal dose for him. Besides increased dyskinesia he doesn't have anyother signs of overdosing.

Any advise would be greatly appreciated.

[Gioc]

Hi Sanay,

IMHO is a good indicator means that PD surviving suffering cells react very well to b1; nobody really knows what determines this up and down trend of b1, but perhaps the theory that Dr C explained to me in simple words can help.

The lesion of the organ varies in size and characteristically from patient to patient and the dose must be adapted to this.

The surviving cells have different health conditions that vary from completely healthy to very tired on a gradual scale.

b1 energetically helps dopaminergic cells by reactivating the tired part, this would perhaps give an explanation for the good initial response that some have.

Ldopa is important because if the lesion is large, the surviving cells still cannot produce all the necessary dopamine.

This is what I understood from Dr. C.'s explanations and it is only theory, IMO the best theory I know. Nobody really knows what to do, but taking short breaks and nutrition rich in minerals and vitamins with fresh vegetables in my case has helped a lot.

[Sanay in reply to Gioc]

How would this explain the increasing dyskinesia?

[Gioc in reply to Sanay]

I don't know sorry 😞

[Gioc in reply to Sanay]

The chemical reactions involved in the brain are very complex and sometimes you have to settle for practical functionality or not

[Sanay in reply to Gioc]

Yes agree to that..we applied the same theory and thought may be by taking B1 and increased dyskinesia mean low dose of levadopa..

So initially a little low dose of levadopa settled the dyskinesia but it started again and we kept lowering the dose to almost half but it didnt go away and the off times were again terrible.

So just stopped B1 and again started with the initial full dose and everything became normal again

[Gioc in reply to Sanay]

Sorry I did not understand. Initial dose of levodopa? b1? or both?

In my experience you shouldn't be stuck at a fixed dose of b1, even if you have to determine your optimal dose. If you notice symptoms between b1 overdose, it is better to suspend a few days up to a week .

As the wise Park Bear says it takes time for the body to adapt to this new situation, for this reason it is better to be well fed with fresh vegetables and varied fruit without exaggerating.

The best way I know to raise a dose of b1 from zero is to increase b1 very gradually with a little trick which is a rule when dealing with the fact that with vitamins we mainly solve the body's deficiencies: “if a dose, activate a symptom probably the same dose will resolve it by continuing.”

Obviously it should be applied with common sense always for mild symptoms that are a body adjustment. For example, if you increase 100 mg every two three days and there is a suboptimal situation at 300, you stop at that dose for a few days until the body resolves the situation, otherwise it goes down a step. it is in contrast with the method of dr C which is much more authoritative than me. It is only my practical experience that can apply to me and perhaps no one else. I apologize for the bad English but I use a translator and it's not always correct.

[Sanay in reply to Gioc]

I was talking about lowering the dose of levadopa..b1 we kept constant at 1g

[Gioc in reply to Sanay]

ok i understand now. Thank you

[rescuema in reply to Gioc]

Dr. C's reasoning probably is - High dosage B1 hcl is required for most because high enough concentration of thiamine in the blood level allows passive diffusion for the BBB absorption, as to depending on deficient/defective enzyme transporter activity.

[Gioc in reply to rescuema]

Certainly Rescuema, but cerebral cellular reactions are so complex that it is better to be well nourished with everything else, especially minerals such as magnesium and calcium.

Yes, even calcium is so badly treated.

Here is an example of a research on how a deficiency of free calcium affects the absorption of thiamines in the nerve cells of rats.

Well, it is better to be well nourished with vegetables and fruits that provide everything you need and a little bit of calcium and magnesium, take note.

PS.ah the thiamine weakens the teeth with time.

onlinelibrary.wiley.com/doi...

[rescuema in reply to Gioc]

Why do you state "the thiamine weakens the teeth with time" ??

It is absolutely important that you don't run deficient in ANY mineral or nutrient - this is why eating a balanced diet is important and you don't simply infuse massive amount of certain vitamin/mineral without sufficient amount of other required co-factors. Taking a Multi vitamin is a good assurance and nutritional gap must always be addressed. Also, people often don't realize that when you supplement something out of balance, it often has an antagonistic effect on absorption of another. Calcium is an absolutely important mineral that contribute to important bodily functions as well as electrolyte balance that must come from proper diet, but incorrect excessive supplementation will affect magnesium absorption and cause heart problems as well as prostate cancer.

My comment about Dr. C's method is simply to address why starting with a lower dosage of thiamine is ineffective for people, because for many, it simply will not cross the BBB due to lacking transporter activity. That's why you start high and then lower the B1 HCL as the transketolase activity gets restored, or opt for Benfotiamine (also absorbed through passive diffusion and boosts transketolase activity) or TTFD (for the BBB) because neither are dependent on transporters in order to get utilized immediately.

[Gioc in reply to rescuema]

Rescuema, that thiamine weakens the teeth is my personal experience with the practical use of this vitamin. It is my opinion that thiamine eats free calcium and the teeth are affected.

[rescuema in reply to Gioc]

Well I certainly hope that's not the case and have never heard of such from others who have been on long-term thiamine supplementation, but I'll be on the lookout with your anecdotal experience. In any case, with you having had the history of noticing the immediate benefit of calcium supplementation, is it possible that you might be deficient in calcium store? Do you have white spots on your nails (possible mineral deficiency, such as Zn which affects calcium homeostasis)?

Long-term calcium deficiency could certainly contribute to leaching out of Ca from bones and teeth. Diets high in protein and sodium (with your love your salumies) can also cause Ca excretion. You might also want to make sure that you're not deficient in vitamin D - check your blood level since D is needed to absorb calcium. I would also look into supplementing K2 with it.

ncbi.nlm.nih.gov/pubmed/266...

[Gioc in reply to rescuema]

Thank you Rescuema, I will,

we could open a post about how vitamins and minerals interact with each other. IMHO Cellular life does these things: can't it find vitamin C ? It takes B in its place; it often does so with neurotransmitters as well.

We should open a post dedicated to these interesting topics.

[rescuema in reply to Gioc]

You're right - mineral displacement with toxic halogens and metals is another important topic that people should be very aware of, especially pertaining to iodine, bromine, fluoride, etc. that contribute to various illnesses. However such a post can't possibly be succinct enough even with over simplification and/or will end up as a book/study. Unfortunately the topic is complex enough for each case by case problem, but the information is out there for those who put in the time to perform the research.

[Kia17 in reply to Sanay]

Obviously the B1 has done it’s job but when taking with Ldopa then too much dopamin causes dyskinesia. I would speak to my doctor about adjusting Ldopa dosage.

[Sanay in reply to Kia17]

Yes even we thought the same thing and adjusted or lowered the l dopa dosage ( he is on mucuna) but then his on times were reduced and that did not help much.

If B1 was actually doing its job then he should have same length of on time even with the reduced dose of l dopa.

We were expecting this but that did not happen..

That is why not sure what is happening exactly.

[Gioc in reply to Sanay]

Sanay, the case is interesting because it potentially has great room for improvement. In my opinion you should collect more data. For example what kind of ldopa do you use and how? Have you tried C / L? When does dyskinesia occur and is it predictable? etc. So we could better advise you if you want.

[Sanay in reply to Gioc]

Currently he is on mucuna 4-5% 4 times a day. Also we have just started taking 1/4th of sinemet cr 125 45 min before each dose which is giving him longer on times almost an hour in each dose.

He typically has dyskinesia when the mucuna kicks in for about 15mins and when it is about to end before 15mins.

It follows the same pattern each time.

But when on 1g of B1 he had dyskinesia almost the entire time he was on medications.

It came back to its norm again after 5 days of stopping B1.

[Gioc in reply to Sanay]

I understand Sanay,

I'm not an expert in Mucuna , I use madopar, ( similar to Simenet), but I think the case in question is very standard.

Seems like a clear dyskinesia from the peak dose prolougued by use of b1.

I think someone is more experienced of Mucuna could answer better than me ; let see someone help us.

Sorry if I ask again but what dose of mucuna does he take in mg each time?

IMHO it doesn't seem to me like a good idea to mix the two types of LDopa at least in this experimentation phase.

[Sanay in reply to Gioc]

He takes about 6g of 4-5% of mucuna each dose..but because of lack if carbidopa it gave me shorter on times just two hours in each dose..so we thought of taking 1/4th tab 1 hr before to get just the carbidopa from sinemet and that increased his on times by 1 hr on the same mucuna dosage

[Gioc in reply to Sanay]

IMO there are two things you could try: 1. The use of Ecgc (green tea). as it says here:

researchgate.net/publicatio....

. the second try the injectable b1 (Im intramuscular, in the butt) which is the HDT standard of us Italians who never gives problems, I buy them here. (maybe in your country want the recipe).

homoempatia.eu/search/resul...

[Sanay in reply to Gioc]

Thank you for your interest and suggestions..mean a lot to us..

Will definetly look into it.

[Gioc in reply to Sanay]

I have been doing b1 injections for four years, two a week of 100mg, per dr C recipe before he got sick. no side effects. My wife does it to me. I have tried to switch to tablets also recently, but I have not found myself well. In my opinion they interact with the intestinal bacterial flora in some way. An example, only an exemple how the assimilation through the intestine can give variations in LDopa assimilation

science.sciencemag.org/cont...

[bepo in reply to Sanay]

You had the wrong dose of B1. When the symptoms get worse, try lowering the dose. I thought that the PD drugs caused dyskinesia not mucuna. My husband has taken mucuna since 2015 and never had bad side effects. He takes 40% at 650 mg. I think B1 , which he has been on for a month, is going to improve his situation for the rest of his life!

[Sanay in reply to bepo]

We will definetly try with a lower dose

[Gioc in reply to Kia17]

It would be nice if it were that simple, but the mechanisms of dicinesia and sudden off periods, seem more related to dopamine storage in the vesicles, which leads us to a more complex dynamic.

[park_bear]

This goes to show a different we are one from another. I recommend trying a lower dosage of B-1 - 200 - 300 mg. If that still causes dyskinesia then reduce the dosage further.

[Sanay in reply to park_bear]

We have tried at 500 and 600 mg..no dyskinesia but no significant improvement as well..

May be we need to give more time on time on smaller dosages

[park_bear in reply to Sanay]

If there is no dyskinesia at 500 milligrams then stick with that. It generally takes 3 to 4 months for most improvements.

[Sanay in reply to park_bear]

Yes thinking of starting 500mg after a week and will see the results.

[Rosenmu in reply to Sanay]

I have issues with regulating the B1 as well, I've started taking the B1 for a few days and take a day off or cut back. The fluctuating the dose seems to help. I'm wondering if my system gets over loaded and my result is anxiety. I dont have a set schedule as yet. I take mucuna and sometimes see very slight tremors, have upped that slightly. The biggest problem is the anxiety from the B1.

[Gioc in reply to Rosenmu]

Rosenmu in my opinion it is the symptom from too much b1.

I would decrease a little or better I would skip a few days. This won't make a difference in therapy.

[Rosenmu in reply to Gioc]

Yes, have done that and I agree with you.

[bepo in reply to Rosenmu]

I think the PD causes the anxiety. B1 should help it, from my understanding

[Rosenmu in reply to bepo]

I didn't start having issues until I upped the B1

[bepo in reply to Rosenmu]

Lower the dose?

[Rosenmu in reply to bepo]

Yeah, I'm kind of all over the map with it now, but no more anxiety as long as I don't take too much. I'm sensitive to transdermal gutathione too, guess I got enough of that as well.

[chartist]

Sanay,

Dr. Costantini said a correct dose of B-1 should not cause a worsening of symptoms, only improvements. It appears that your husband is a B-1 responder, but at 1,000 mg total per day, you say his dyskinesia worsens and once he stops B-1 for 5 days the dyskinesia returns to normal. If that is correct, then according to Dr. Costantini, your husbands dose is likely too high at 1,000 mg per day. You already know that 500 and 600 mg per day does nothing in terms of apparent symptom improvements. That leaves 700, 800 and 900 mg per day as three doses which you have not tested yet. The 1,000 mg per day is too much and the 600 mg per day is too little based on what you have said and what Dr. Costantini has told us previously. His solutions are to lower the daily dose below 1,000 mg per day or raise it above 600 mg per day or skip a day or two of B-1 dosing per week .

Here is a link to the HDT/B-1 FAQ page and please read as much from this FAQ page as possible.

healthunlocked.com/parkinso...

Art

[Sanay in reply to chartist]

Will do that thank you.

[alaynedellow]

Read my two long posts about my B1 journey. I would recommend a slow increase and each increase trialled at least a month. Video hubby talking n walking to compare n keep journalto monitor progression. My posts will show how long it takes. Good luck

[Sanay in reply to alaynedellow]

Thank you will do that.

[LAJ12345]

It may be you are also missing another essential nutrient too. Try taking Hardy’s essential nutrients as well as the b1 so you don’t run into other deficiencies. Once the b1 starts fixing things some processes will need other vitamins so might grind to a halt again if you are missing something else. There was a good post a few days ago on this. Quite long but worth watching I think.

healthunlocked.com/parkinso...