Starting on B1: We started with 1g... - Parkinson's Movement

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Starting on B1

Sanay
Sanay
50 Replies

We started with 1g of thiamine per day for my husband.

500 mg before breakfast and 500mg before lunch since 5 days.

We have not noticed any improvements yet but the only symptom we found to be on the little worst is his speech.

( increased slurred and stammering ).

He had speech issues prior taking to thiamine too but we find that they are getting a little worse now. Except that all of his other symptoms are same.

Also after he takes sinemet all his speech symptoms go away.

After the 5 days on thiamine we find that he has a little difficulty in speaking even when 'ON'.

Pls advise me on the dosage whether to increase, decrease or continue on the same for some more time.

50 Replies
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Sanay
Sanay
in reply to Hidden

Doctors here have no other solution except more sinemet or dbs..

They didnt even bother to prescribe sinemet cr..

So in a way they are already not treating effectively..

So disappointed with them.

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Jennyjenny2
Jennyjenny2
in reply to Hidden

Your first paragraph is correct. We are laypeople, and many of us have had amazing results so far.

Regarding your second paragraph, that is correct again. We are the wives, husbands and friends of people with Parkinson’s, and we are ardent supporters of thiamine as we see firsthand the results of HDT. It makes our lives easier too, not just the PwP.

Your third paragraph...well, if your doctor didn’t want to treat you because you took vitamins, time to look for a new doctor.

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mannp
mannp
in reply to Jennyjenny2

Jennyjenny2,

I’m in total agreement with you.

Margie

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Jennyjenny2

My above response was in reply to MALAYAPPAN’s original post, before it was edited.

Most people are extremely thankful for the ‘casual observers’, that are now mentioned above. They come here with their huge hearts, to help spread the work of Dr C. This site is all about helping each other, not to criticize.

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Despe
Despe
in reply to Hidden

". . . laypeople here right. . ."

I wouldn't call DR. COSTANTINI a layperson!

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HiddenThis reply has been deleted
Jennyjenny2
Jennyjenny2
in reply to Hidden

Do I sense sarcasm, MALAYAPPAN? No room for that here!!

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Despe
Despe
in reply to Hidden

I will ignore your sarcasm. We don't need it here.

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John_morris71

Need to be careful about dosage as one dosage does not fit all. May be for a few days you could reduce the dosage by 50% or shift (spacing) the 500 mg before lunch to later in the evening. Note that I am not an expert, just my opinion. ( I am giving my mother 500 mg before lunch mixed along with her kefir. Initially gave her up to 500 mg x 3 during the day - for a couple of months and since the past few months she is getting only 500 mg, once a day).

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mannp
mannp
in reply to John_morris71

Beware, taking b1 Thiamine hcl in the evening can effect your sleep. I’m one that can’t take it after about 3:00 pm or I’ll be up all night. Not everyone has this problem.

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mannp
mannp
in reply to John_morris71

It is best to take the b1 twice a day because it does not build up in your body. It is eliminated in sweat and urine. Whatever her ideal dose is should be divided in half and taken twice a day.

Margie

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Jennyjenny2

Dr C has said with worsening of symptoms, stop the B1 immediately for several days (5-7?) and resume at half the dose.

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mannp

It’s a little soon to experience improvements. I am concerned about the speech. My suggestion is to take only 500mg, if that is the size of capsules or pills you have, once a day. Try this for a week or two. If speech is improved try increasing back to 1000mg. If the speech is okay gradually increase from here. If the speech is impacted again stick with 500mg and try ordering some 100mg tablets. Add 100mg to the 500mg. You may have to play with the dosage in 100mg increments to find his ideal dosage. Remember this is a safe vitamin. Any excess consumed and not used by your body is excreted in your sweat and urine because this is water soluble. Other types of Thiamine like mononitrate are fat soluble and build up in your body and organs. This can be dangerous. This is why it is so important we use b1 Thiamine hcl. The hcl is very important. Good luck. I hope these suggestions help.

Margie

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Sanay
Sanay
in reply to mannp

Thanks will try to do that

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GioCas

Sanay ,IMHO the wrong thing with thiamina is to be in a hurry, another is to change the treatment whenever the case changes, obviously b1 changing it. I could easily be wrong but from the little you write it would seem that simenet works better and is more effective on symptoms now. In my opinion as user of b1 If he sleep well at night he does not experience agitation that are symptoms of overdose I would not change for a while.

Excuse me what kind of b1 he use?

PS he had start GJ at the same time, IMHO not good idea.

Keep calm, we have time to try every thing, the PD has a relatively slow course.

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Sanay
Sanay
in reply to GioCas

No sleep problems or agitation as of now just with the speech.

We are using thiamine hcl.

We just tried grape fruit juice for once and then stopped immediately.

Yes as of now sinemet us working good.

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GioCas
GioCas
in reply to Sanay

Very well,

a suggestion... every time I was visited by dr C made short videos where he would take 1) in my face while I was pronouncing the name and date of the visit. 2) my trembling hands at rest. 3) while walking 4) feet in the pull test. This video has a total duration of no more than 90 seconds. It is quite important in the case of gradual improvement, because in the following years, reviewing them gave me the certainty that I had improved. (the first video is impressive for how much I was shaking).

A video of dr C giving a “pull test” for example:

Take care!

Gio

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rescuema

Is he taking any other multivitamin?

Slurred speech could result from vitamin deficiency, possibly B12. High dose of B1 could affect the absorption of B6, which also participates in B12 absorption.

It would not hurt to try some sublingual B12 or supplement carefully with other B vitamins based on the noticed deficiency symptoms ( B6 - dermatitis, rash, cracked lips, etc), taken away from B1. B's compete for absorption.

If trying B6 (keep the dosage low or split pills to daily value around 5-10mg to 30mg, not more than 100mg), look out for the p5p active coenzyme form, not the common pyridoxine form.

It's always a good idea to incorporate natural B complex such as organic unfortified nutritional yeast with meals.

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Sanay
Sanay
in reply to rescuema

No multivitamins as of now.

I think D.C didnt want any vitamins with B1 because then we would not be able to see the complete action if B1.

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rescuema
rescuema
in reply to Sanay

That is taking a risk for the purpose of someone's scientific tracking, especially while not closely monitored as in many DIYs on this forum.

Most people's gut biomes are compromised due to exposures to drugs, chemicals and pesticides/herbicides in the US, which translates to being deficient in crucial minerals and vitamins and the need for supplements in addition to pristine diet (which most don't). There's absolutely no risk in carefully supplementing the needed vitamins, and B's work in conjunction with each other in an intricate relationship, and being deficient in one causes cascade of other problems whether directly involved in an enzymatic process or not allosterically.

Dr. Constantini mainly cautions against "high dose" of B6 while on his thiamine protocol because it is reported to lower the l-dopa available for brain, but avoiding this critically important vitamin would be extremely detrimental especially for PWP in the long run. Read the below for why.

theparkinsonsplan.com/blog/...

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MarionP

You are taking the HCL water-soluble variety? Most important to verify and only use that.

You need to supply a great deal more history, a very great deal, before any answer would make any kind of sense. Got to have the full context.

"Also after he takes sinemet all his speech symptoms go away." Worth remembering.

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Sanay
Sanay
in reply to MarionP

Yes we are going with thiamine hcl solgar brand.

Sinemet does help with the speech also as ut helps with other symptoms.

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MarionP
MarionP
in reply to Sanay

Then I'd suggest you take more time to study up on B1 while benefiting from the current meds. It's nothing you learn in five minutes.

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guy1947

I don't take B1, tried it but couldn't find the right dosage,

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gwendolinej

I’ll tell you of our experience. You may as well learn from other people’s mistakes and also realise there’s no perfect dose. My husband started on 500mg. and we progressed from there, far too fast, to 4000mg (4g) and caused a massive spike in his blood pressure (up to 214/110). I’ve noticed some say they only saw a change after 3 months. Anyway, we stopped, waited a few weeks. Blood pressure dropped. We’ve started again on 1g.

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rescuema

It could have been a B6 deficiency due to B1 overdose. B6 is needed for Mg absorption as well as B12, etc., and the B1 along with drugs for PWP can leave you deficient of the important vitamin.

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gwendolinej

Thanks for that. Do I get a multi vitamin or B6 I wonder.

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rescuema

It depends. In your husband's case, I'd try both. Some people are genetically compromised in absorbing certain vitamins as in SLC19A3 or MTHFR so one solution would not apply to all. I'd try a sublingual P5P depending on the noticed symptoms in addition to a well balanced B complex away from B1 and other medications. With a high blood pressure, the problem may lie in the lack of potassium, magnesium (controls blood K level) , or B6 that allows Mg absorption along with other B's involved in the citrix acid cycle, etc., which is why a good multi and Mg supplementation is a good practice especially when your diet isn't pristine.

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GioCas
GioCas
in reply to gwendolinej

HI gwendoline.

we PD sufferers are very interested in what influences our brain metabolism, that is, beyond the blood brain barrier called bbb. For this reason perhaps b1 should be kept a little higher for a certain number of hours. I eat lots of fresh vegetables and use supplements of other vitamins and minerals like magnesium and calcium only occasionally, but I make sure they are of good quality. On the market there is a lot of old and poor stuff. Vegan products seem to be the best. Magnesium threonate seems to be the only one that goes beyond the bbb, but I use a mixture of various types of magnesium including the threonate, like the good advice from Rescuema they say. I always try to be simple and savvy when using supplements.

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gwendolinej
gwendolinej
in reply to GioCas

Thanks for that. Yes, I read on this site recently that l-threonate was the one to get. Have ordered from our pharmacist. My husband also takes a multi vitamin supplement and vitamin D. Our pharmacist has been a great help and we have a wonderful neurologist, not to forget our GP (of 40 years). On that note, I've never mentioned on this site that he is taking Neurofolin, recommended by our GP for depression. It contains L-methyl folate, an active form of folate, that effectively crosses the blood-brain barrier. It can be taken with an anti depressant or on its own. For my husband it especially worked in giving him back his appetite . When the Neupro patch stopped working, he went down hill fast. His Apathy came back and he almost stopped eating. The Neurofolin gave him back his appetite within a day! It hasn't helped his apathy, which is his major symptom and always has been. Our pharmacist says that it's done wonders for a lot of people with anxiety and depression. We are not talking a about PD patients. That of course always complicates things.

Again thanks.

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GioCas
GioCas
in reply to gwendolinej

Hi Gwendoline,

I completely understand you, apathy is a really difficult attitude, especially for those who are close to an apathetic person.

Personally I think it has a partly physical cause and a spiritual part.

All over the world it is often resolved by resolving nutritional deficiencies in a decisive manner. Here on HU there are people who will be able to give you a great help on this part. The spiritual part concerns the motivations of the person and it is a little more difficult as it requires the collaboration of the same person who unfortunately is in apathy, but something can always be done.

This is just my poor opinion of a person who does not know the situation .

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gwendolinej
gwendolinej
in reply to GioCas

I don’t think it applies here. Alan has severe apathy before diagnosis. Was then diagnosed with LBD. Levadopa didn’t do anything. Then started on the Neupro patch and hey presto, apathy totally disappeared. It was amazing. It lasted from 2012 till late last year.

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GioCas
GioCas
in reply to gwendolinej

I understand you.

Gio

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rescuema

Does your husband have Morton's foot (second toe longer than the first?).

If he experienced a good partial result with L5-MTHF or L-Methylfolate, then he may be genetically compromised and need methylated B vitamins, especially the aforementioned P5P. Monrton's foot is a phenotypical expression of a gene in result of P5P/PLP deficiency. I'd be curious to see how he does with P5P - you may be pleasantly surprised and it may improve his sleep since P5P is necessary for malatonin production. He probably needs a methyl sublingual b12 as well.

Apathy is one of B6 deficiency symptoms.

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gwendolinej

"Who'd have thunk it " Yes, he does have Mortons Foot. Not very noticeable. Will get the B6 and B12, as you suggest.

Could any of this affect his absorption of levadopa? Even taking 2 tablets four times a day doesn't work properly. It's been measured many times over the years, as well as on this larger dose, by the wearable PKG System (a watch in my language). On the graph it goes up after medication, but not to where it should, and then drops much quicker than it should.

Re his blood pressure...that's a roller coaster. Previous to PD he had high blood pressure (genetically predisposed ). His first PD symptom was severe apathy, first seen as depression. He spent 2 months in hospital, no change of course..treating the wrong thing. That's when his low blood pressure (Orthostatic hypotension) was picked up, went to a specialist and was put on Florinef. He was on that for a few years and had also developed a bladder problem. (another specialist). Then, out of the blue, his blood pressure goes up! He goes off the Florinef and on to high blood pressure meds AND his bladder problem disappeared. And NOW his blood pressure can be as low as 85/60 or up to 160/90. His pharmacologist specialist has just put him on a patch to be worn at night ( when his blood pressure goes up). To be taken off before he gets out of bed. We are watching the low blood pressure. We don't want to go back on the Florinef if we can help it, but he is very unsteady on his feet. Maybe, if we get some of these other problems solved, he won't need to.

He doesn't have a tremor, but has other physical symptoms, including the mask.

I really appreciate your input to this site. You are a great support to a lot of people.

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rescuema

I don't know if you've checked out the link I've posted in response to Sanay above, but it's worth checking out. Posting again below regarding levodopa.

In addition to the reasons for high blood pressure I've posted earlier, B12 deficiency could cause low blood pressure, and again B6 contributes to B12 absorption and Mg. I don't know if you've checked your husband's homocysteine level, but B6 B9 and b12 are responsible for regulating the inflammatory marker and blood pressure and the adrenals may also be compromised (see the 2nd link) for regulating the blood pressure due to nutritional deficiencies. Also check your husband's potassium level and if on the lower side (Florinef lowers K), supplement with potassium citrate so that aldosterone, not Florinet or other synthetic drugs, could do its job naturally with the sodium-potassium pump. Look into Ashwagandha - it is an adaptogenic herb that could help with the adrenals. TTFD supplementation may be worth a try as well since he may be lacking in thiamine transporters and thiamine deficiency leads to dysautonomia.

theparkinsonsplan.com/blog/...

health.harvard.edu/heart-he...

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rescuema
rescuema
in reply to GioCas

Please note that most people do not need calcium supplementation and get adequate intake from food. High mg intake enhances calcium absorption (mg regulates calcium), but a high ca intake can block mg absorption since they're antagonists. If you have a need to supplement calcium, be sure to take it with K2 and away from D3 after checking your blood Mg level and not deficient in boron level.

I also like Mg L-Threonate and take TTFD to pass the BBB.

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GioCas
GioCas
in reply to rescuema

Rescuema,

IMHO calcium serves if you use magnesium, it relaxes muscles; I use it occasionally mixed with apple vinegar and magnesium before going to sleep and it detoxifies, but you won't find it written on the books. Anyway I'm not an expert like you. I am more inclined to practical use and experience and often wrong, but I am a moderate. Magnesium L threonate changes the effectiveness of Thiamina from my experience, but I also use other forms that help with the body.

I always read your posts that I find very useful and thorough, Thanks for being here with us, your help is greatly appreciated.

Gio

PS: What is TTFD.

and from what area of ​​the planet are you, if I may ask?

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rescuema
rescuema
in reply to GioCas

TTFD is thiamine tetrahydrofurfuryl disulfide, also known as Allithamine or Lipothiamine (enteric coated). It does not require thiamine transporters to be absorbed and crosses the BBB and not as transporter-dependent as HCL, and because of the ability to cross the lipid barrier people often mistake it to be a fat soluble form, but in fact it's water soluble and can be taken intravenously as in Japan that discovered the disulfide form. Biological activity wise, there's no difference between thiamine and TTFD once absorbed. I'm in the US TN btw.

Dr. Lonsdale and Dr. Marrs are the field experts in TTFD. To learn more -

hormonesmatter.com/ttfd-thi...

amazon.com/Thiamine-Deficie...

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GioCas
GioCas
in reply to rescuema

Thanks Rescuema,

A nice answer from Dr Lonsdale one of the leading experts in the practical use of vitamin b1 that I read again with pleasure. Yes, because this discussion is not new here on HU. Dr C has advised against only the use of Benfothiamine as from the research of Dr Bettendorf of the University of Liege, cited by Londsale.

L. Bettendorff is one of the leading scholars of thiamine, and had invited Dr. C. in to the congress on vitamin b1 in 2015 in Liege, to give a lecture regarding the practical use of thiamine in neurdegenerative diseases in front of the world's leading experts as Dr. C himself reveals in an interview on you tube. Dr. C has never advised against Allithiamines, see Roy at the beginning, but has always been for him a second choice after b1 HCL.

I don't know why, I suppose it was that the b1 HCL has a hundred years of experience and is well known by all doctors, while the allithiamine is a few years old. IMHO sometimes for a doctor who prescribes a new treatment worldwide, the context is important. However my opinion that Allithiamines could play a role for people who have had problems with b1 hcl pills.

The last known, HDT in the original version is the use of two intramuscular injections of Thiamina HCL from 100 mg per week with a stay of one week out of three, which I have been doing for 4 years without any side effects known to me, but also the pills are fine, I believe.

ncbi.nlm.nih.gov/pubmed/185...

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rescuema
rescuema
in reply to GioCas

"the allithiamine is a few years old" - to put it into a correct context, the Allithiamine "brand" may be relatively new, but the TTFD was discovered in 1951 and been in use for a long time for treating Beriberi. The fact it's not readily available and affordable than b1 Hcl probably limits its popularity. I'm aware that Dr. C does not object to people using TTFD but I'm sure he prefers the form that he's more familiar and have long experiences with, and people generally want to follow a protocol with a proven track record.

Benfotiamine has its own use and can be more effective in certain cases since it's more readily absorbed and bio-available than either TTFD or B1 Hcl for the peripherals and organs. Yes, there's one old rat study that shows Benfotiamine doesn't directly cross BBB with frequent citations, but there are also many studies that show it has beneficial effects on neurological performance such as in children with Down syndromes and reverses cognitive impairment in mice over water soluble B1. Without understanding the precise mechanism of its delivery I wouldn't dismiss the efficacy since it reportedly diminishes brain plaques, prevents tau protein accumulation, and reverses memory deficits in some studies.

Bottom line - if one doesn't work, it's worth trying another. If a protocol works, stick with it.

ncbi.nlm.nih.gov/pubmed/203...

ncbi.nlm.nih.gov/pmc/articl...

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GioCas
GioCas
in reply to rescuema

I agree ... but I mentioned the same old study quoted by Londsale in his reply that you posted.

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rescuema
rescuema
in reply to GioCas

I understand. Regardless, you may find the study articles I've attached earlier interesting particularly in regards to TTFD aka Fursultiamine vs Benfotiamine.

"Unexpectedly, these effects were not mimicked by another lipophilic thiamine derivative, fursultiamine, although both benfotiamine and fursultiamine were effective in increasing the levels of free thiamine in the brain. Most notably, benfotiamine, but not fursultiamine, significantly elevated the phosphorylation level of glycogen synthase kinase-3alpha and -3beta, and reduced their enzymatic activities in the amyloid precursor protein/presenilin-1 transgenic brain."

The study shows that Benfotiamine, not other B1 forms, was found to reverse cognitive impairment.

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GioCas
GioCas
in reply to rescuema

ok this is beautiful! Do you tell it to Art that benfothiamine works better than Lithium Orodate for cognitive impairment ? 😁

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rescuema
rescuema
in reply to GioCas

Since not everyone suffers due to the same disease origin for a labeled ailment, mitochondrial damage or nutritional deficiencies, one solution is not superior nor applicable for all outside controlled lab studies. Missing trace minerals, vitamins, or toxicity can cause compound effect down stream eventually leading to a diseased state.

For some, TTFD or Sulbutiamine may be best to cross the BBB, and for some it may be IM hcl, Benfotiamine, missing Bs that could dump thiamine, or other combinations to find that essential missing link.

Unfortunately allopathic medicine rarely ever looks into vitamin nor nutritional deficiencies, so you have no choice but to be diligent to track your own symptoms and become your own advocate for medical treatment decisions while staying skeptical of unsubstantiated claims. Process of elimination becomes an unavoidable course of action, so trying various things as long as proven and researched to be "safe" while adapting as clean/organic and varied diet becomes imperative for maintaining/improving your health in addition to vital daily physical exercises.

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chartist
chartist
in reply to rescuema

rescuema,

I think Dr. Costantini was well aware of the available and useful forms of thiamine and similar products, he is a great fan of Dr. Lonsdale, but because he was treating many patients from around the world, part of his decision making process of what to recommend to his patients was partially based on availability and cost of whatever he recommended. Even if a product may have had similar or better attributes than thiamine HCL, if it was hard or impossible to obtain in many parts of the world, it would be pointless for him to recommend it and again, if it cost significantly more than thiamine HCL, then that would be a consideration also because these products are not covered by insurance, then it would be a direct out of pocket expense for his patients, some of whom may be on fixed or very low income. Dr Costantini had to consider these things in order to come up with a protocol that would be doable for as many people as possible around the world and I suspect these points helped him to decide to choose thiamine HCL as the supplement of choice for as many patients as possible.

Here in the USA, we have access to many supplements and we may take that fact for granted, but he had to consider much more than the USA in deciding what he would recommend for his protocol.

Art

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rescuema
rescuema
in reply to chartist

Exactly, I've alluded to that earlier.

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MarionP

Most seem to say it takes some months, including Dr. C. who has said up to 6 months, and that is assuming then a stable therapeutic dose for the individual, to wait while expecting to see some sorts of results. Time, stability and patience for quite a while seems to be in order for many people as a proper test, so you must be prepared for that.

Then next, many people also have reported that after a time of being on B1, the benefits may be masked, i.e., not always prominent but sometimes very subtle, but highly and immediately noticeable upon withdrawal, and THAT is the point at which they experience an appreciable, obvious signal that they have been benefiting, and then they must return to the withdrawn dose, sometimes they must return right away because the lost benefit can be appreciable and when withdrawn, symptoms occur that can be like falling from a ledge. This does not indicate some sort of addiction or dependence, but rather a benefit, much like perhaps adding sugar to a bitter or bland drink to the point that it is appetizing but not prominent, and then like suddenly removing the sugar or adding lots of salt, anyway that's the immediate analogy I think of...you experience a screaming need to "put it back!!" Like standing on a ladder or chair and having it pulled away.

Finally, a significant part of the benefit is in symptoms and the disease not getting any worse. This is a different sort of appreciation or experiencing of "getting better." So be on the lookout for that, again, a "longitudinal" effect that takes months, years perhaps, to notice or appreciate. So be thinking of that as part of the expectations. Think marathon, not short sprint.

Further, a number of people have reported that they tried to use B1 as, eventually, a substitute for meds that were more actively working and perhaps over time developed side effects or had dose side effects or whatever as time went by, also as the disease progressed, and withdrew their med thinking that the B1 would do as a substitute. Seems to me that those that I have read having done so were very sorry afterward, realizing that it's not a safe thing to think of it simply as a future or viable substitute, at least, not automatically so.

Finally, everyone has a starting point with B1 that is the actual stage of the disease you are at when you start using it. Earlier in the course of the disease seems to show the most benefit going forward, as you come to start using B1 in the later stages, the benefit is lessened, there is less the molecule can accomplish, so modify your expectations according to that as well...remembering too that everyone's stage, pace, and response to things in their disease is to a fair extent unique and not necessarily comparable to someone else's, though you might be close enough to compare to some.

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Sanay
Sanay
in reply to MarionP

Thank you..very well explained.

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