VITAMIN B1 THERAPY : Hi everyone, This... - Parkinson's Movement

Parkinson's Movement
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VITAMIN B1 THERAPY

Ozziedon
Ozziedon

Hi everyone,

This is my first post, I have seen some stories about VIT B1 therapy and would this type of therapy help restore movements

What are the thoughts of this type of therapy? What have studies revealed. Are there long term gains in using this therapy.

81 Replies
oldestnewest

Ozziedon,

Welcome to the forum!

You have a lot of questions about HDT/B-1.

Here is a link to a post that will answer many, if not all of your questions :

healthunlocked.com/parkinso...

The following link takes you to a post where some forum members describe what they think of the founder of HDT/B-1 :

healthunlocked.com/parkinso...

Good luck!

Art

Vitamin B1 use instructions ;

Join Facebook group

Parkinson’s thiamine hcl

m.facebook.com/groups/23226...

Boyce3600
Boyce3600 in reply to RoyProp

Roy, I live in Texas and am currently having trouble getting refills of the Thiamine HCL for my husband. I had to order from Canadian World Pharmacy to get some. It was sent in ampules not vials and I panicked, but but i have learned how to open them now. One Pharmacist guesses it is in high demand during this Covid because it boosts immunity. I would like to have other resources from which to get it. Can u help? Without it, my husband is even more listless. thank u

RoyProp
RoyProp in reply to Boyce3600

I do not know where to source injectable. Go to Facebook group and enter B1 injection in Search

Also search HU.

Join Facebook group

Parkinson’s thiamine hcl

m.facebook.com/groups/23226...

Boyce3600
Boyce3600 in reply to RoyProp

thank u

None of the studies have been double blind (or blinded at all), so please keep that in mind.

The claims regarding B1's supposed positive impact on disease progression are dubious (and I'm being delicate).

gwendolinej
gwendolinej in reply to ChrisWF

Have you tried it Chris? As my husband’s neurologist said “try it, there won’t be any studies as there’s no money in it. You can’t patent a vitamin or supplement “.

ChrisWF
ChrisWF in reply to gwendolinej

I would hope that a neurologist seeing parkinsons patients would be aware of the trials involving exercise, which also can't be patented.

The following are myths:

- there are never any clinical trials into the efficacy of a therapy if it can't be patented

- you can't make money from things that arent patented

Despe
Despe in reply to ChrisWF

May ask when you were diagnosed with Parkinson's and what meds you are taking? Thank you!

ChrisWF
ChrisWF in reply to Despe

I'd prefer to stay on-topic, thanks.

Despe
Despe in reply to ChrisWF

Do you have a problem talking about your PD? This forum's members are mostly PwP and care givers like myself.

Interesting. . .

ChrisWF
ChrisWF in reply to Despe

I have a problem with obvious attempts to take a thread off-topic and prefer not to participate in them unless i think doing so is necessary or adds value in some way. Thanks.

GioCas
GioCas in reply to ChrisWF

Well! Then you will be happy to continue helping Ozziedon here. It would be appreciated.

Despe
Despe in reply to ChrisWF

Good evasion. . .

pdpatient
pdpatient in reply to Despe

Despe, well said. ChrisWF was not being nice to you while you asked a polite and appropriate question.

Despe
Despe in reply to pdpatient

Thank you. :) I looked at his/her profile and it only indicates the date he/she joined this forum as well as

healthunlocked.com/parkinso....

Not sure if he/she is a PD patient or promotes this trial.

ChrisWF
ChrisWF in reply to Despe

And maybe you are a B1 saleswoman?

Despe
Despe in reply to ChrisWF

. . .

ChrisWF
ChrisWF in reply to Despe

😂

I am 🤣🤣🤣a B1 salesman but to no financial success. Although I’ve greatly benefited from using B1. I wish I could give this stuff away for the benefit of those suffering from Parkinson’s. Two years using B1 😃

pdpatient
pdpatient in reply to ChrisWF

ChrisWF, we are all comrades in shared efforts to find ways to mitigate our misery. Therefore, although I have not been on this forum for too long, I have developed a deep sense of appreciation for the comraderie, congeniality, shared sense of purpose and a hopeful desire to have a better quality of life expressed by forum members, despite having one of the most terrifying and socially embarrassing as well as socially ostracizing in most ways and most countries.

I understand, emphasize and appreciate your frustration as a patient or a caregiver ( i have not looked up your profile yet) and I feel your emotional pain. But your pain or frustration is not an excuse for your rudeness.

Being snarky, rude or condescending towards other members of this forum is not appreciated. It's not my job to police behavior on this forum. I anticipate that you will probably call me out on that. However, the forum moderators are overwhelmed and they are not going to vet everything. I am stepping up and chiming in because of your over reaction.

Despe asked you a question, nicely, and I see nothing wrong with that. Immediately ascribing an interior motive with sinister intentions is wrong. Your response was startling and uncalled for.

Let us all resolved to be nice to each of please.

ChrisWF
ChrisWF in reply to pdpatient

Excuse me?

Despe asked me about my condition (completely irrelevant to the remarks i had made about B1 - I was not offering a person al anecdote about B1 usage). I politely declined to go off-topic by saying "I prefer to stay on-topic, thanks"

Should that not have been the end of that discussion? I politely declined to engage in what I felt was an off topic discussion.

It was, in fact, Despe who then rudely implied that there is something fake about me or my PD because I wasn't willing to bend to her whim, when she posted this:

"Do you have a problem talking about your PD? This forum's members are mostly PwP and care givers like myself.

Interesting. . ."

I was trying to discuss B1, as the original poster had actually requested. Despe, presumably unwilling or unable to dispute what I had actually posted about B1, instead decided to engage in an act of 'gatekeeping' by calling into question my 'PD credentials'. When I quite politely declined to do so, instead of either letting it go, or saying "maybe another time, then", she rudely implied I was a fake.

If you read the entire thread, you'll note that I was willing to go into some of that information with another poster (gwendoline). I did so because she had actually engaged in the topic of discussion, and then asked me as part of that engagement.

No one here has a right to demand anyone else's story. If you ask someone a personal question and they politely decline to answer it, dont cry foul if they are then direct with you if you keep pressing them.

What's really going on here is this: if you ever offer even the slightest hint of criticism of the Great Dr C or HDT, there are several members who prefer to go after the poster rather than the post. I can only assume they do this because they cant dispute what is in the post. This forum is supposed to be about playing the ball and not the man, rules that generally everyone is ok with....until you are anything but profoundly positive about B1, at which point the gloves are off. Having seen this type of diversion here before, in this case I decided I wanted to shut it down before It started.

pdpatient
pdpatient in reply to ChrisWF

ChrisWF, I like your clear explanation of the sequence of events. I read the entire post thread just now. I probably should not have interjected. I just saw that you were both going at it and said something. The moderators need to be more clear about the rules of engagement. I will let Despe defend herself.

Yes, you are correct. For the short duration that I have been on this forum, I have noticed that the B1 topic arouses some startling and extreme passions. It's actually funny because ultimately, we are all anonymous by design and necessity for privacy. There's nothing to gain or lose by proving one or the other - namely whether it works or not. After all, the symptomatic relief that we get from any medication or supplement is only ephemeral or fleeting. I just came off a terrible OFF period with extremely violent shaking of my right hand. The feeling that I get after the Rytary has finally kicked in is fabulous. Unfortunately, the dyskinesia or dystonias that follows tempers the short-lived joy.

I personally don't take any supplements except for Mannitol because of the enormous complications that we can get into if we ever end up in the hospital. I am in the USA and generally the practitioners here frown upon supplements and vitamins and I can't imagine most doctors here endorsing the protocol or for that matter any other protocol. The reason is that we are an extremely litigious society and Neurologists are among the top ones being sued.

Ozziedon
Ozziedon in reply to Despe

My PWP is semi self sufficient, most problems aare motor related.

Ozziedon
Ozziedon in reply to Despe

PWP was diagnosed 7years ago and takes no meds.

WinnieThePoo
WinnieThePoo in reply to ChrisWF

Patents are widely misunderstood, especially by the anti-pharma brigade. My friend owns the patent for Achromat - a record player mat which improves the sound quality by reducing unwanted energy from the record player stylus due to the microbubbles in the material.

The mats are cut from regular marker board foam.

The patent is for the way the material is used, not for the material.

I'm going to go out on a limb and make a prediction. Although there will be natural remedies which relieve symptoms and help disease management, the cure for Parkinson's, WHEN it is found, won't be a herb or meditation or other natural source. Parkinson's is going to be cured by science, and very probably that cure is going to be delivered by Big Pharma.

It may be a while yet...😥

ChrisWF
ChrisWF in reply to WinnieThePoo

Yes one only needs to look at contemporary clinical trial information to see that many new compounds being trialled (and potentially patentable) are simply old compounds mixed together or used for a different thing.

In any event, the absence of a direct profit motive doesn't prevent the funding of a clinical trial.

GioCas
GioCas in reply to WinnieThePoo

You sure, Winnie? Then why has Pzifer been retired from PD research since 2018? They don't believe it either, or so it seems. :-)

npr.org/sections/thetwo-way...

WinnieThePoo
WinnieThePoo in reply to GioCas

I'm sure nobody is going to find the cure in the fruit bowl, or in the forest. Ever. And its not, and never will be, B1 (however helpful that may be for many). It's not a cure.

There is a ton of science happening at the moment. My SPARK trial is one of dozens in progress. There are 3 proper stem cell trials in progress, DBS and MRiFus trials and new treatments. So Pfizer are focussing their research elsewhere because they're not very good at neuroscience and want to specialise on core skills. That doesnt mean science has stopped researching the condition and no Pharma business is researching. As I repeat endlessly, Big Pharma is not one giant corporation but dozens of independant ones in competition with each other.

There's loads of science happening. Eventually it will crack this bloody disease.

There is a line I heard one of the presenters of a Parkinsons Uk seminar use

"I have Parkinsons disease. And I have optimism. Only one of those is incurable"

:-)

GioCas
GioCas in reply to WinnieThePoo

Richard,

In fact IMHO to make an advance it takes the "discoveries" usually are made by brilliant people with a bit of luck and in free societies avoiding the oppression of the monopolies power of the status quo.

The Catholic Church did this in a period of the past, then they apologized, but have not yet remedied at today.

(look Galileo )

So it seems to me the history of R&D (an acronym for Sharon, R&D= Research & Discovery). :-)

Hopefully they'll find the cure soon, maybe your trial will give it to us, (by the way what is the story of the discovery of BIIB054? I read that it's an antibody to alfasyn that was chosen among others in a preliminary research on people I think, it would be interesting to know it maybe in a dedicated post).

PS: In the fruit bowl Fleming found the mold of penicillin,

meditation will give us spiritual freedom and interrupt the cycle of birth / death so you go beyond the disease,(Buddha reference),

the forest is a dark and sad place, but there are those who like it.

But these are just ironies that break the monotony that for me is the most terrible thing in life.

Joking aside, I would find one your post on BIIB054 interesting and educational for everyone.

Many Thank.

Gio

WinnieThePoo
WinnieThePoo in reply to GioCas

Gio

I started doing a new thread about BIIB054 and accidentally deleted it after half an hours work. I'll have another go maybe when I have recovered my morale

Meantime you can find out quite a lot by googling

Richard

GioCas
GioCas in reply to WinnieThePoo

Richard, I'm sorry, things happen to the best.

I'll use Google, but written by you also participating in the trial with the possibility to ask questions I would find it very interesting.

When you rewrite it, if you want to,

I will read it with great interest.

Thank you very much anyway :-)

Gio

gwendolinej
gwendolinej in reply to ChrisWF

Have you tried B1 thiamin Chris? I’m assuming you have PD?

ChrisWF
ChrisWF in reply to gwendolinej

Yes to both.

My contribution was in response to the question "what have studies revealed". I thought it was worth noting that the studies were open label.

justjohn46
justjohn46 in reply to ChrisWF

well chris im with you all the way on exercise i have tried the things people with pd have tried all the pills you can think off all the b,s tried it all the only thing that helps me is getting up early in the morning and out walking and exercising i walk about 7 kl every day i also have siatic pain in the morning im in a lot of pain im bent over in the morning with the pain but i still push on im on pain killers but by 9.am im feeling ok again im 74 this year they wanted to opp on my back but said it was 2 dangerous as it might not work and ill be bed ridden for life.so my good parkie friends if you can get up early in the mornings and exercise its the best thing you can do.i can still dance i have parkiesons for about 7 or 8 years i went to china for stem cell treatment 22,000 dollars later im still the same.regards john,from australia.

I don’t need a double blind study for a supplement that is water soluble. From personal trial for approximately 2years now, the benefits are undeniable.

Fine, but the poster specifically asked about the studies as part of their post. I'm sure anecdotes are valuable, too.

I have been using it for almost five years now and I feel comfortable, I have no negative effects after all this time. I have a lot more energy and I continue to work full time and for those who know Parkinson and suffer from it, they know what a big difference it makes.

RoyProp
RoyProp in reply to GioCas

What is your B1 dose?

GioCas
GioCas in reply to RoyProp

Hi Roy,

My dose is n.2 . intramuscular injections , sometimes also 3 of 100 mg Thiamine hcl at week, skipping a week a month.

homoempatia.eu/product/vita...

RoyProp
RoyProp in reply to GioCas

Three weeks , stop one week. Three weeks, stop one week.

Repeat again.

Is that what I understand?

GioCas
GioCas in reply to RoyProp

I apologize, I wrote unclear. Sure Roy you got it right: 3 week on thiamina followed by a week stop, 3 week on thiamine followed by a week stop and so on.

RoyProp
RoyProp in reply to GioCas

Small change in my ability to brush my teeth. Resolved after dose adjustment to 6g orally daily. But today I had a separate problem and don’t know the why.

There is undoubtedly a lot of anecdotal evidence for its benefit to Parkinson's. Just because evidence is only anecdotal doesn't mean it is untrue. And Dr Costantini, an Italian neurologist obtained substantial clinical experience with the therapy.

I have found nothing to suggest it is unsafe to try, and as such, aided by the excellent resources Art (chartist) has put together, I think it is worth trying

I agree with ChrisWF that there is clear evidence from enthusiastic users of B1, including Royprop, that it doesn't halt progression of the disease. And that this illustrates how some things are promoted by some supporters as absolutes without sufficient justification.

The recent hydroxchloroquine trials are an example of how experienced clinicians can draw false conclusions from single centre observational trial.

But, almost certainly harmless and worth trying.

RoyProp
RoyProp in reply to WinnieThePoo

Is a reversal similar to halt progression?

Diagnosed 2012

My regimen:

The positives after B1: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more (less) constipation. Parkinson's progression stopped. Suppressed most motor and non-motor symptoms...

My 8th year post diagnosis and have not fallen, not once, to the surprise of my neuro.

WinnieThePoo
WinnieThePoo in reply to RoyProp

Not really Roy. The reversal is similar to symptomatic relief. My Parkinson's"reversed" when I started pramipexol.

No progression is that reversal being permanent. Not getting new or worse PD symptoms after the first"reversal".

My understanding is that your PD has progressed with things like restless leg which are a PD symptom you have now but didn't have before.

Ditto looking at needing more B1, considering DBS.

RoyProp
RoyProp in reply to WinnieThePoo

Pramipexole gave me edema

WinnieThePoo
WinnieThePoo in reply to RoyProp

I know. But it didn't give me edema. It "reversed" my Parkinsons (it gave me a worse cough - which is not good in the world of Covid, so I've stopped it for a while too. But it improved my Parkinsons symptoms, and one day, I may restart it)

The reason you tried Pramipexole was because your Parkinsons had progressed and you had a new problem to treat.

And your Parkinsons had progressed even though you were taking high dose B1

Maybe it had progressed less with the B1 than it would have done without it, but it progressed - and gave you a new, or more troublesome symptom - restless leg

RoyProp
RoyProp in reply to WinnieThePoo

I was disabled before B1. Restless leg was so minor.

GioCas
GioCas in reply to WinnieThePoo

IMHO You two operate in a different context, that is, at a different stage of the PD. It makes a lot of difference.

I benefit the B1 effects since Dec 2018 together with my teraphy, no side effects since then. I've PD diagnosed in 2013 at 46yo. As well as improving many symptoms such as slowness, tiredness and fluidity, b1 above all stabilized the therapy by completely eliminating motor fluctuations I was suffering. I work full time, I drive and lead a normal social life. I have the difficulties that every PWP has, good days and bad days, I am certainly not cured, but for us it is important to maintain the quality of life for as long as possible and vitamin B1 does help. Like so many here I have tried 1000 supplements, the B1 was the only one that really worked for me making some kind of difference in my life.

ladypeanut
ladypeanut in reply to LuckyLuke

I am so glad to hear you are getting relief from the B1! My husband originally began with injections a few years ago. He is now taking tablets. What dose is working for you? What you have learned through the dosing before you found the proper dose for you? Did it impact your sleep at all? My husband is feeling some improvement in his symptoms and energy but is wondering about his difficulty in getting and staying asleep. He is feeling too revved up to sleep as he shifted his dose to 3000. I know everyone's experience is different. I am curious just the same.

LuckyLuke
LuckyLuke in reply to ladypeanut

Hi, I started in 2016 with B1 (when I was still not taking drugs) took B1 for almost a year and I had no tangible benefits. I was very disappointed, I was so hopeful about.

At the end of that year I started classical therapy. In Dec 2018 I found myself having to increase L-dopa due to motor fluctuations and casually I found that on this forum there were many who continued to experiment with B1 and I asked the doctor to try again.

I'm lucky because I live in Genoa and my neurologist is Doctor Fancellu who worked with Dr. Costantini at B1. This time, the benefit was immediate after a few days with 100ml 2x injection per week and improved really a lot of symptoms. I was really slow at the time. After a month I had to halve the dose because it was too much. I did about 6 months of tests raising little by little until Aug 2019 to 100ml full again 2x week. Since then I have been doing very well, so much that I asked the Doc if I can do it 3x week, because the day of the injection I am doing very well and this last for 2 days. So I want to try doing more but I'm scared it's too much.

I have no problem sleeping. I never slept much even before the PD, max 6 hours per night. I do gym every day at least 45 minutes is very important. I hope it will help you sort something :)

ladypeanut
ladypeanut in reply to LuckyLuke

Thank you so much for your candid response. I will share your information with my husband, who has had Parkinson's for 10 years now. We had the opportunity to engage with Dr. Constantini through email in the USA. Unfortunately, after we began with the same initial injectable dose you mentioned, Dr. Constantini became ill and we couldn't go much further without his guidance at that time. Then, the injections were too much for my husband to do when his symptoms were troublesome, so he stopped. We just started back with tablets now and are into it about a month or so. He began with 1000 and is now up to 3000 and feeling a gradual improvement. I thank you for your insight and wish you only the best with your health. :)

LuckyLuke
LuckyLuke in reply to ladypeanut

Wish you all the best to your husband too. I did the trials myself with dosages, because you have to feel it and your hubby can do it alone too, my wife helps me a lot too we make videos to compare before/after as there are improvments you may not notice. Just halve the dose and stop for a month or so if it's too much, then start again, then try rise again. It's a rollercoaster but I think it may be worth it! Good luck ;)

GioCas
GioCas in reply to LuckyLuke

LuckyLuke,

Never were words wiser!

Mai parole furono piu saggie!

Gio

tigerclaw
tigerclaw in reply to ladypeanut

Hi ladypeanut… Can you tell me how he takes the B1 ? Is he taking it in the morning with empty stomach with Sinemet ? Or with food ? Thanks

ladypeanut
ladypeanut in reply to tigerclaw

Hi Tigerclaw - He takes his Sinemet at 7 AM without food and then his B1 Vitacost capsules of 500 mg, for a dose of 1,500 at 8 AM with 6 prunes in the morning. He has his full breakfast, which is devoid of protein, about 8:30-9:00 am. He then takes the remaining 1,500 mg of B1 at 12:30 PM, which is an hour before lunch at 1:30 PM, which is often a huge salad. He has found that taking B1 any later then 12:30, he will be unable to sleep at 11:00 PM, which is bedtime. His diet is organic, gluten-free and with no added sugars. Breakfast and lunch consist primarily of fruits, vegetables and potatoes. Protein, which is either wild-caught fish, free-range poultry and grass-fed beef on rare occasion, is eaten at dinner only, along with a starch, such as rice or potatoes and vegetables. Let me know if my response has created any additional questions for you. I hope the information is helpful to you.

Ozziedon
Ozziedon in reply to ladypeanut

Thanks to all for your input into this discussion, I have gained so much positive information. So much to reflect on.

tigerclaw
tigerclaw in reply to ladypeanut

Thank You ladypeanut!

chartist
chartist in reply to ladypeanut

At one point Dr. Costantini briefly mentioned that he had some patients take their entire oral daily dose in the morning to lessen the chance of sleeplessness at night, but he never said much more than that on the subject other than he said some people actually got better sleep from B-1.

You say your husband switched to 3,000 mg/day, but you did not say what the previous dose was and why he switched? Care to elaborate?

Art

ladypeanut
ladypeanut in reply to chartist

My husband is very sensitive when it comes to meds, vitamins and any other substance like mucuna. A lower dose is better, even though he is of the belief that more must always be better. However, based on his sensitivities, we went slow and began with 1,000 (500mg in am / 500mg at lunch). He didn't feel much of a change after 10 days so he went us to 2,000 with the same split dosing. He started to feel clearer in the head and the episodes of tremors, dyskenesia and dystonia were lessening in duration. So after another 10 days, he went up to 3,000 and split the doses the same way. Due to the sleep issue, we made a point of making sure he starts earlier in the day and to be sure the luncheon dose is no later than 12:30. Although the sleep issue has lessened, we wondered if there were any better strategies. He is feeling a bit better still. Improvements are incremental but yet he feels sharper in the brain and feels like he can function more. No more balance issues, where he was losing his balance before beginning the B1 Protocol. We are hopeful yet want to be sure we are doing all we can.

chartist
chartist in reply to ladypeanut

ladypeanut,

There is the option to take the second dose at the same time as the first dose or there is the option to take the second dose 2 or 3 hours after the first dose. It can be taken with or without food. Since he is still searching for the correct dose, Dr. Costantini seemed to try and go as long as possible at each dose because some people just respond very slowly, but at the first signs of loss of improvements, he would have the patient stop the current dose for 5 days and take meticulous notes during the whole process, but especially during those 5 days off to see how quickly the worsening stopped or reversed. The sooner the worsening stopped or improved, the closer he felt you were to the ideal dose and of course he would use the push test to help him determine the optimal dose. A good push test in conjunction with good symptom improvements and he would feel that you were at or very close to the optimal dose.

The lowest effective dose that has been reported on this forum is 25 mg/day and the highest is 4,000 mg/day, but both of those doses are the exception and not the rule! Most are closer to the middle of that range. A dose that is too high can even cause new symptoms that have never been seen before, but the new symptoms always went away after stopping and correcting the dose as Dr. Costantini reported from his office and email patients.

Do you know how much he weighs? What disease stage is he at? How long has he been at 3,000 mg/day? What medications he is taking?

Mainly at this point Dr. C would leave him at the current dose for possibly weeks unless a problem like loss of gains occurs.

Congratulations to you and your husband that he is a responder to HDT/ B-1, as not everybody is! He is also fortunate that he is responding quickly to B-1 as some people have not seen benefit for up to 7 months and then benefits would start to accrue from that point on.

At this point you mainly want to pay close attention for any worsening of the improvements he has noticed that he attributes to B-1 as that will be the first indication that his dose is too high. If that should happen Dr. Costantini would reduce the dose based partially on how long after starting the 3,000 mg/day dosage he noticed any worsening. If it takes a long time, that generally means the dose is close, but a bit high. At the first sign of worsening, Dr. C would have him stop B-1 for 5 days

Hopefully you took a lengthy video of your husband prior to starting B-1, doing different things such as walking, talking, writing, going up and down stairs, walking in a large figure eight and pretty much any common activity he does regularly to have a good basis for comparison to later videos. Ten minute videos should be enough to clearly identify changes, both positive and negative. The frequency of these videos could be once a month or whatever works well for both of you, but not longer than 60 day intervals. A good close up shot of his face might also be included. The videos will be a fairly accurate means of identifying deficits and improvements over time and this is important as most of us think we have better memories than we do and the videos take that error factor out of the equation.

I am very happy for the both of you that your husband is a B-1 responder and seeing benefits already in the first month! He is one of the lucky ones! I am also happy that he has been able to tolerate B-1 so well considering his sensitivities! Please keep us updated on how he does and please monitor his blood pressure for any changes from his norm.

Art

tigerclaw
tigerclaw in reply to chartist

Hi Art, unfortunate of Dr constantini illness, we get no respond, .. My mom 76 and she has diagnosed back in 5 years. I try anything and everything possibly out there to help her Parkinson symptoms cut done. She currently taking 1 Sinemet 25/100 and wait 30 minutes after and eat her breakfast and taking 1, 500mg B1 hcl by solgar with food she now she takes this about 4 months now. But she has a balance issue and a bad tremor. Wonder if we should increased now for a 1000mg B1 or higher to see the improvements for her tremor and balance issue., and with food or with out food. Her weight is about 100kg.. Any suggestion ? Thanks so much..

chartist
chartist in reply to tigerclaw

For patients who wanted to start lower and work their way up, Dr. Costantini didn't have too many suggestions other than continue working your way upward giving each dose enough time to see if you get a response. You've given the first dose plenty of time so he would normally have you increase the dose and see if there is any benefit at the next higher dose. He would mainly start higher and work your way down. Did she see any benefit at 500 mg? If not he would move the dose upward. It is probably a good idea to check her blood pressure regularly while testing B-1.

Art

tigerclaw
tigerclaw in reply to chartist

Thank you Art!

Despe
Despe in reply to tigerclaw

One tablet Sinemet a day? It is a very low dose but you may add Mucuna Pruriens to her Sinemet.

chartist
chartist in reply to tigerclaw

tigerclaw

I forgot to mention, in case you were not aware, Dr. Costantini passed from Covid-19.

Art

Crescendo
Crescendo in reply to LuckyLuke

How much B1 do you take daily? My husband has less energy, and I am hoping this might help.

LuckyLuke
LuckyLuke in reply to Crescendo

2 injections per week, 100ml on Monday and Thursday. Planning to try 3x every 2 days

9Rafiki9
9Rafiki9 in reply to LuckyLuke

Hi there, this is Gérard, a new user. What a fantastic group of people.... Thanks to you guys/girls, I have discovered and read a lot about HTD/B1, and what you just wrote, is music to my ears. So much so, that I have an appointment with Dr. Fancellu next Tuesday. Of course I will be posting when the time comes. Kindly let me know if you have any practical recommandation, I understand it may be a little challenge to get into the hospital... Thank you all you wonderful people !

LuckyLuke
LuckyLuke in reply to 9Rafiki9

Hi Gérard, I'm glad to hear you'll have the possibility to get a visit in person in this period! Is the appointment at Padiglione 40 San Martino hospital? How you will arrive in Genova (car, train, airplane)? Let me know so I can give you some advices ;)

9Rafiki9
9Rafiki9 in reply to LuckyLuke

Thanks for your help, I’m driving from Lausanne, then will spend the night at Il Giardino de Albaro. Keep you posted, cheers....

LuckyLuke
LuckyLuke in reply to 9Rafiki9

Ok, it's the PADIGLIONE SPECIALITA' (NEUROLOGIA), just write it to a sheet of paper so if you have difficulties will be easier to get directions. It's very easy to reach. If you use your private car, there's a small parking before the main entrance next to ER.

Do not enter the hospital with your car or you will be lost!!

(it is difficult for locals to find their way around, for foreingners it could be a nightmare...). So you have 2 options:

1 your private car and park in the small parking

2 taxi and stop in front of PRONTO SOCCORSO (Emergency)

then in both cases a 3 min walk to Padiglione Specialità. I attach a map where you can see it's less complicated than it seems

bit.ly/2B6jz5Y

There are work in progress next to Padiglione Specialità but on foot you don't have to worry. Walk on the sidewalk close to the wall until you meet a very large entrance with sliding glass doors, enter the atrium and then inside the building, once inside go left, on the right side of the corridor there's a chapel then there are clinics, look for NEUROLOGIA . Come in and find the nurse. He will probably visit you on the same floor or on the 2nd floor, but at that point it will be the nurse to give you information. Good luck!

9Rafiki9
9Rafiki9 in reply to LuckyLuke

Many many thanks LuckyLuke, these are first class instructions !

Certainly saved me running around the place. One more thing with out abusing your time, but could you tell me where you buy the injectable thiamine in the case Dr Fancellu prescribes this form of treatment. While in Genova I might stock up before I leave.

LuckyLuke
LuckyLuke in reply to 9Rafiki9

You're welcome :) I'm happy I can help, I hope B1 will be beneficial for you.

In Italy the B1 brand is called 'BENERVA' but it's expensive, since raised in popularity also the price raised.... I use Ratiopharm, the sale price is 3,78€ but you can find a lot of sales in online pharmacies expecially from DE as this is a german brand.

I bought mine here lately:

homoempatia.eu/product/vita...

but just making a quick search today I found this site selling at 50%

medikamente-per-klick.de/vi...

so you can make a search in your country also. Even if the dosage seems different this is exactly the same B1 amount of 'Benerva', there's just more water in the vials.

Dr. Fancellu know this brand you may ask him if it's ok.

If you need any other info for your trip or anything, just write me back.

9Rafiki9
9Rafiki9 in reply to LuckyLuke

Thanks for Pa-zzi69 who provided details of his visit to Genova last June and also to LukyLuke who kindly helped me with the local logistics, I was lucky and able to consult with Dottore Roberto Fancellu last Tuesday (16/07/2020). The Hospital San Martino opened it’s door on Monday. Prior to that I had been in touch with Dr. Marco Colangeli, who also pointed me to Dr. Fancellu as the new channel for anyone who wanted to implement the HDT/B1 protocol. He has been involved with Dr. Constantino’s work for more then 7 years.

After the usual physical examination that we all know too well, Dr Fancellu went on to explain in great detail how each MAO or COMT inhibitors or agonist actually work. I could have listen to him for hours, and although I have consulted with a large number of neurologists over the years, this was the first time I really understood the choices we have in terms of medication. Dr Fancellu did suggest some possible alterations to my PD medication, but I will spare you with the details, stay as concise as possible, and state only the fact relating to the HDT/B1 treatment:

- 3000mg / day oral therapy is equal to an injection of 100mg twice and week. Although I initially though I would be offered this second option being in principal more efficient, Dr Fancellu prefers to start patients on the oral therapy and only shift to the injection if/when the oral method does not render the desired results.

- After 2 weeks on 2000mg/day in 2 takes, (I’ve started 15 days ago) I am now ready to increase to 2500mg/day. In a further 2 weeks I am to get in touch with him, and possibly increase to 3000mg/day (still in 2 takes) Then I will probably maintain this dose for 2 or 3 months all going well. As we all know, some can be blessed with immediate benefits others after a few weeks and some never will, unfortunately.

- I mentioned that on the first night of taking B1, I woke up several times with an ill-feeling sensation which kept me up. This is very common to first time users, but rarely last more than 2/3 night. I was fine on the second night.

- It is advisable to take Magnesium in conjunction with the HDT treatment, he suggests a 100mg tablet or sachet every 2nd day.

Regarding major symptom benefits it is too early to tell, but I am pleased to report that from the second day I already noticed that I regained my sense of smell or at least part of it. Also I substantially reduced the amount of drooling on my bed pillow, that's nice ...

More to come - I hope !

General information for new patients:

Appointments are to be booked through the hospital San Martino's back office via email intramoenia.padiglione40@hsanmartino.it or by phone +39 010 5554580. Once Dr. Fancellu has seen and evaluated the present condition of a patient, he will provide follow up via email (roberto.fancellu@hsanmartino.it). The consultation lasts 30/40 mins and costs EU125.

Keep you posted,

Gérard

LuckyLuke
LuckyLuke in reply to 9Rafiki9

I'm very happy for you Gérard and I hope will be beneficial to you! Just don't discourage when you will have to adjust the dosage it's kind of a rollercoaster for some of us but if will work, you will get relief and this is the most important thing!

9Rafiki9
9Rafiki9 in reply to LuckyLuke

Not sure about the number of the Padiglione, he mentioned Padiglione Speciale near the Emergency. On the map I could not see the Speciale, but I am sure someone will know. I hope to arrive at 1400h for a 1500h appointment

Safe travels, congratulations, please keep us posted

Look up dr Constantini on YouTube. Wonderful stuff

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