THIAMINE, another view: Let me start by... - Parkinson's Movement

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THIAMINE, another view

condor39
condor39

Let me start by saying I really, really, hope that Thiamine does all it is claimed to do.

My credentials for giving an opinion are, I qualified in medicine 60 years ago, so I saw what dopamine could do when it was first introduced. Secondly I was diagnosed with Parkinson’s a year ago at age 83, so I have a vested interest in any cure, or improvement.

Any condition which has symptoms varying day to day, week to week, or hour to hour, will have sufferers, anxious for help, trying anything they think might improve their condition. Placebo effect, wishful thinking or coincidence will have people convinced that they are improving, and some become advocates for whatever it is that seems to have helped them,

While I really hope that Thiamine helps, I would warn that it has all the stigma of yet another mass delusion. There is a major advocate, Dr. Constantine , who seems an honorable man, and I am sure is a true believer, but a fervent belief is not proof. Then there are a host of true believers who promote the cause.

One warning is that, for those who visit, or who write for advice, after carefully considering their symptoms, and sometimes examination, all get the same advice and treatment . Injections of Thiamine, so there is little need to contact him, the advice is always the same. There is one cure for whatever ails you. At least Thiamine is safe and relatively non-toxic.

I have seen many examples of mass delusion in my years of practice. Remember the recent “cure” for MS? People were flying to foreign countries to have cerebral vein blockages removed at enormous expense? Many convinced themselves that they were cured or improved, but it took years to show there was no change.

Similarly, on this website there are many pushing “Supplements” which they are convinced help them. Some taking 30 a day? These people are no doubt genuine, and sincere, but can be very misleading, and provide false hope.

I take my advice from one Neurologist, and take one drug (Proplopa) and no supplements at all. I prefer a drug with known proven efficacy, and known side effects to the possibly false hope of unknown efficancy and unknown side effects.

Some patients have a very mild form of Parkinson’s, and are genuinely convinced that their regime is the answer. I wish them luck, but ones personal experience has proved very misleading in the past.

Let me end by repeating , I really hope that Thiamine does all it is claimed to do, but I have my doubts.

73 Replies
oldestnewest

Greetings.

Yes, there is a divide in the Parkinson's community, like there is with all health issues, i.e., those who are dismissive of supplements and those are not. I am of the not camp and I believe, actually, the amount of hard, scientific data is overwhelming -- as in a mountain, that some supplements are of benefit to some people to some degree. Same as drugs - some benefit to some people to some degree only without the side effects.

Regarding thiamine, apparently, it seems to benefit about 20% of people who take it and some of them benefit substantially from it. 20% is a pretty impressive number considering the low cost and easy access and risk near 0 -- so I don't feel it's comparable to your examples.

I know with certainty there are PWP, some on this forum, who feel they have slowed down their progression, some say they have stopped their progression and some even say they're symptom-free. Some of those people take pharmaceuticals and pursue alternative therapies, some pursue just alternative therapies, but none pursue only pharmaceutical therapies.

In other words, most people with Parkinson's take Parkinson's pharmaceuticals, get relief from some symptoms, feel they are essential, and are well served by them, but there are no Parkinson's drugs that improve your health.

Lastly, supplements are the same thing as nutrients. If anyone out there can eat a perfect diet, they get the minimum amount they need to maintain health, but in many cases of chronic illness, the RDA isn't good enough because the illness, Parkinson's in particular, causes other illnesses, hormonal and micro-biome imbalances, and nutritional deficiencies many of which cannot be met through diet.

What is Prolopa? Never heard of it. Is that the brand name or is there another name?

alexask
alexask
in reply to MBAnderson

Tis another form of levedopa

GioCas
GioCas
in reply to MBAnderson

Hi MBA

Obviously thiamine helps patients in the initial stage much more, as it is theorized as a restorative effect on suffering cells , but even people with long courses,seem to have benefits too. Sorry to say but for the latter only the restoration of dead cells will help, not only with the stem cell transplantation, but also with other promising methods such as astrocyte reprogramming:

nature.com/articles/nbt.3835

But if the slowing down of the disease is important it is potential response to get it with the b1 (I saw it). Gio

GioCas
GioCas
in reply to MBAnderson

I've been using it for three years, and my UPDRS test is pretty good, I'm only 56 years old first symptoms in 2009 tremor and rigidity, absolute tiredness, after a few hours of a b1 injection without knowing Costantini, having only seen videos on the web, it worked by improving my mobility a lot without any ldopa or similar.

Well if it is placebo this,we have to study what is the placebo because it would open the way to care without medicines.Gio

ion_ion
ion_ion
in reply to GioCas

Works for me, too. No C/L yet. I wish I started B1 1-2 years earlier, before the tremor.

No more slow movements since adopting thiamin hci. The positives: 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 constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...still have mild tremor. You are welcome to call it a placebo effect, but I have my doubts.

Do not be mistaken Condor, we all have our doubts. Parkinson's seem to make people smart. Or does it happen more often to smart people?

How could that be a reason not to seriously try ?

What do we have to lose ?

Risk / benefit / cost is the key. As you say: " Thiamine is safe and relatively non-toxic", and the cost is trivial.

I do not take Sinemet any more most days and my companion has observed my tremor has reduced. No Sinemet today, and no tremor at the moment vs daily Sinemet and more frequent tremor pre-thiamine.

Toogood
Toogood
in reply to park_bear

How long have you been taking Thiamine

park_bear
park_bear
in reply to Toogood

Since beginning of March. Takes 3 months to start to have most effects.

Hidden
Hidden

I may be biased and I may not be seeing it correctly, but from what I can see on this forum from members who do post about what they are doing and taking, the ones only taking prescription meds compared to those taking prescription meds plus supplements or supplements only, the latter two groups seem to be fairing better overall. Again, this is just an observation based on what I have read on this forum and elsewhere and as such is fairly limited. Perhaps it is the proactive nature of these latter two groups that makes a difference. The first group seems to be more in line with "the doctor knows best" and I will just take what is prescribed. Perhaps it is just that so many are doing so well on prescription meds only that they do not feel the need to post their results, but based on what I have seen and read to date, that does not seem to be the case? The first group seems to have the most complaints about overall satisfaction with how their disease is treating them. If I am wrong on these points, I stand corrected. Has anyone else noticed this or am I just too biased to see clearly?

Art

justhavefun2
justhavefun2
in reply to Hidden

All I know is that I started taking B1, B12 and B Complex a month ago at my physicians advice and didn’t think that it was really helping me too much until I ran out of B1 for a couple of days. I had such bad functionality that I am never running out again. Placebo effect? I don’t care... I just don’t want to feel like that again!

Hidden
Hidden
in reply to justhavefun2

justhavefun2, can I copy your post to the who is taking thiamine thread or could you put the post there?

healthunlocked.com/parkinso...

Thank you!

Art

justhavefun2
justhavefun2
in reply to Hidden

Sure!

Hidden
Hidden
in reply to justhavefun2

Thank you! I'll add it right now!

Art

jujulini
jujulini
in reply to Hidden

easilly- you are so right!!! i have been taking only c/l and amantadine for 14 yrs, along with homeopathy, mannitol, and now thiamine. at my last visit, my neurologist told me, "you must be doing something right". as i walk past the people in the waiting room curled up in their wheelchairs, i know hes right. i have posted my experience with thiamine on your other post, but i will also include it below.....

i started with 3 gms thiamine/day per dr c's recommendation, and after 2 reductions in dosage (due to worsening of symptoms), i settled on 1 gm/day - 500 mg at breakfast and 500 mg at lunch. it has been 3 weeks at that dose and i have noticed the following---

before thiamine - distonia of feet about 4 am (cramps in feet and curling under of toes),the only thing relieving it was a half dose of c/l.

after thiamine - no distonia at all, no need to take dose of c/l until i get up at 6 am.

before thiamine - when walking up stairs, i would be unable to slow down and felt like my legs were being propelled by an unknown force.

after thiamine - can walk up stairs normally.

before thiamine - when kneeling on floor/ground to do things like washing floors or gardening, i was unable to stay in that position for more than about 10 seconds. i felt that unknown force again forcing me to stand up abruptly.

after thiamine - able to stay in a kneeling position for several minutes.

i had been showing improvements with homeopathy and mannitol, but that was over a longer period of time. the improvements since taking the thiamine have occurred in only 3 weeks.

Hidden
Hidden
in reply to jujulini

jujulini,

Thank you, that was a great report!

Art

I appreciate your input and respect your years of experience in the medical field. My husband has been on the thiamine protocol for @ two months now, 1500mg x 2 daily. It works. He has been able to reduce mirapex significantly. You know, having Parkinson's yourself, that tremmers, gait, stiffness, ability to smell and taste ect. Cannot be controlled by conveniencing yourself you don't have these parkins symptoms. My husband's symptoms have improved dramatically, I am a wittness to it. He has been on the tablet form and will start injections next week. We have excellent medical insurance but will have to pay out of pocket for the B1 injections, we are happy to do so.

Have faith in this, there certainly isn't any harm in it.

Hidden
Hidden
in reply to Imdefeated

Imdefeated,

I am so happy to hear of your husbands improvement on thiamine!!!

I hate to sound like a broken record, but could you or I copy this post to the who is taking thiamine thread?

healthunlocked.com/parkinso...

Thank you!

Art

Imdefeated
Imdefeated
in reply to Hidden

Yes you may Art.

RoyProp
RoyProp
in reply to Imdefeated

I to am so happy to hear of your husbands improvement on thiamine!!!

No other medical example of such "enormous" placebo effect on so many people and lasting so long... Mass delusion and placebo effect are different things and have different roots. By the way, qualified medics are supposed to know that and make the difference. No need to confuse others by making public your own confusions.. If you do not trust it, just dont take it.

Condor39

I enjoyed reading your post. Thank you for your educated opinion.

Its good that we can all learn from each others experiences.

I am following the thiamine group with interest and will keep an open mind. I've been on this site for 3 years and "know" so many of you. I respect your opinions.

Thanks for keeping us informed.

Sir,

I am 9 yr post dx, last year I had an anxiety attack so severe I was in A&E (ER), the cause? the dopamine agonist ropinirole (I say agonist, on the phase 3 trial papers GlaxoKlein state that's 'the most likely' method of action)

If memory serves me well the first generation DA's were hastily withdrawn due to errr…..

folk dropping dead.

The 16mg of DA I was on were reduced to 10mg, triggering a hellish experience I wouldn't want to repeat.

To compensate, the L.dopa has been increased to 800 mg of stalevo per day which has an

LEDD of around 1200 mg. I'm on more 'Gold Standard' pd medication than I've ever had

and I would describe my current level of symptom control as sh*t! and my judgement on the prescribed medication options is they are, in my experience, largely ineffective and particularly unpleasant/dangerous.

Your post in general is the typical and expected attitude/stance of the medical establishment, I note you were there in the 60's at the launch of levodopa, yes it was a game changer but it is now 2018 and there's still nothing better. Why ? because nobody will think outside the box, deviate from the script or rock the boat.

All physicians, a healers, should be saying 'hell if it's safe let's give it a go'.

My brief dabbling with B1 has been intriguing at least, and I will add my contribution when I trial properly.

Why the delay ? because first my 'Expert' medical practitioner, my neurologist has to try get me some relief with the 'proper' drugs so don't hold ya breath folks !!!

aspergerian
aspergerian
in reply to Niggs

Indeed, would that we could invite Ignaz Semmemweiss or Giordano Bruno to comment upon orthodoxy in medicine and science.

If my memory serves, it took a hundred years of vitamin C curing Scurvy before it was accepted by respected medical people.

My neurologist had never heard of Amino Acid Therapy, LDN, or B1, until she met me. There is really no excuse for that, even if they are a con, it is her job to know that and warn me.

All the best inventions come via non experts working in garden sheds.

Regards,

Peter.

JANVAN
JANVAN
in reply to Harleybob08

Hi Peter !

It's a bit quiet about LDN, but the famous, overbooked Dr. I'm in treatment(Dr. Joachim Mutter), who is rather skeptical about a lot of things (because he has seen a lot of "fantastic health tricks"), said you can give it a try LDN (helps the Immunsystem).

But unfortunately I'm not seeing much posts anymore about LDN.

I'm now taking pills of 4,5 mg at night....(since one week)

Hi Harleybob08,

In 1747 a Royal Navy Physician using a controlled study showed that fresh fruit prevented scurvy. Captain Cook was the first Captain to have a two year voyage with no scurvy, which he prevented by feeding the crew sauerkraut. Before this a 30% mortality rate was usual.

The vitamin itself was isolated in 1912.

I don’t know where you got the idea that it took a hundred years to be accepted, it was accepted at once. As were most discoveries,

Your neurologist is obliged to keep up to date on treatments that work, why you expect her to know all the hundreds of things that don’t work?

Where are all these inventions discovered by non-experts in garden sheds? I can’t think of any.

Hi Condor,


@ 4.20 tells one version of the vitamin C story.

My neuro can’t deny that the Amino Acid Therapy is working, she has declared herself “redundant”. She is open to learning, but is no doubt wondering why she hasn’t heard of it before.

Just google “garden shed inventions”.

Eg.

titangarages.com.au/about/n...

Regards Peter

There is a need of a reliable trial to prove the efficacy of B1

jujulini
jujulini
in reply to iqbaliqbal

but its not gonna happen. no money in it for the drug companies.

alexask
alexask
in reply to jujulini

In an ideal world governments would fund research such as this. I also would have thought even that the Michael J Fox foundation would be keen on this. Not quite sure why. Perhaps the results would be too good for the continued funding of this research.? Getting more and more cynical in my middle age.

Or maybe it is not cool enough to research everyday available vitamins and supplements which might actually work.

jujulini
jujulini
in reply to alexask

youre not too cynical. youre absolutely right.

MBAnderson
MBAnderson
in reply to alexask

Cynicism (and complaining about healthcare policy) is good citizenship.

mannp
mannp
in reply to jujulini

Donate to Dr. Constantini’s cause on Go Fund Me to help Fund a Trial. We all need to help.

It would be nice to have a trial, but I don't know how much it would matter because if I run across anything that's cheap, available, safe, and works well in even 5% of the population, I'm trying it.

Amen.

mannp
mannp
in reply to iqbaliqbal

Go to Go Fund Me and donate to Dr. Constantini’s cause to fund a trial. We need to help this worthwhile cause. I know I’ve been helped by the Thiamine hcl protocol.

Hidden
Hidden

A General MD should recognise that” hope” is powerful psychological medicine and that “false hope” is an oxymoron

Giving HOPE to your fellow PwP is FREE, dear doc! Let's compare your conventional medicine's results to that of THIAMINE in a year!

13 years on Madopar and Sifrol ER.

Running out of options now as I need more and more to function....too many.

I can still, eat, drink, write, think, converse, cook, dress myself, admittedly I have to hang on to something to do so, but I’m frail. Feel topheavy with legs and feet wanting to collapse in my ‘off’ periods which outweigh the ‘on’ periods. Rely on my Walker and my Walking Stick . It’s very hard to feel optimistic but I am cautiously so, with the good Doctor C. who has emailed me with his protocol.

If you don’t try...you will never never know.

HGE

Thank you H. Thinking of you and I sincerely wish you well. I have been reading so much on HU that I think it's about time that I stopped procrastinating and jumped in with an email to Dr C. Please keep us posted. Jj

Thank you Doctor (Condor39), your post needed to be read by so many of us as a reminder. Snake oil? NO-but not for everyone.

How long did it take for infection with the bacterium Helicobacter pylori (H. pylori) to be recognized as the primary cause of stomach ulcers? How was the discoverer of this treated by the medical community?

condor39
condor39
in reply to danfitz

A great example of how science works, once the evidence was in, it was accepted at once.

GioCas
GioCas
in reply to condor39

emh...we could ask to speed up the evidence a bit, not yet 60 years old, my family and I would need it, but also 7 million other people with PD in the world.

mannp
mannp
in reply to GioCas

Gio we must donate to Dr. Constantini’s Go Fund Me to Fund a clinical trial. Please help spread the word.

GioCas
GioCas
in reply to mannp

Yes, I did

danfitz
danfitz
in reply to condor39

Hardly a great example. The medical community resisted for decades.

Hidden
Hidden
in reply to danfitz

I remember back around the early 1980's a friend's dad had bleeding ulcers and was sick everyday from it. His doctor was seeing him about once a month and he was not getting better, only worse. I told him about treating the H. pylori and to talk to his doctor about it. At his next visit he asked his doctor about this specific treatment and his doctor told him he had never heard of it, but he would do some research and see what he could find. At his next visit, his doctor started him on the treatment and shortly after that, his ulcers were gone! I remember thinking it seems strange that a doctor has to learn about a viable treatment option for ulcers from his patient!

I think when it comes to new potential treatments that are not main stream, doctors are resistant to even considering them as is readily evidenced by the reports on this forum when people have asked their doctors about using B-1. A typical response is, "never heard of it for PD" or, "it won't do any good" ! Sometimes you have to be your own best advocate!

Art

condor39
condor39
in reply to Hidden

You did your friend a favour,

H,Pylori as a cause of ulcers was firstreported in 1982, and the first treatment was developed in 1987.I cant’t explain why the doctor did not know about it, it was widely reported in the medical press, and in the press generally. It was a great breakthrough.

Hidden
Hidden
in reply to condor39

It was and at the time I thought I had read about it in a magazine like Consumer Reports or Readers Digest of all places! That was the early 80's and here we are 30 some years later and with the current state of the medical system, doctors have even less time to read the latest news on the medical horizon!

Art

condor39
condor39
in reply to Hidden

Again, not true. All Canadian Physicians have to complete set hours of supervised post graduate study every year.

Hidden
Hidden
in reply to condor39

condor39,

I am speaking of the USA and here you are lucky to get a full 15 minutes in the doctor's presence, because they are that busy! I don't think the Canadian medical system is really comparable to here!

Btw, saying that what I said is 'not true', is the same as calling me a liar and that is just rude on your part!

Art

jujulini
jujulini
in reply to Hidden

Easily - YES YOU DO! (have to be your own advocate)

Hidden
Hidden
in reply to condor39

condor39,

You said the following :

'A great example of how science works, once the evidence was in, it was accepted at once.'

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

According to this PubMed article, what you just said is just plain wrong! Here is a direct quote from that article :

' The clinical community, however, met their findings, with skepticism and a lot of criticism and that's why it took quite a remarkable length of time for their discovery to become widely accepted.'

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

Art

condor39
condor39
in reply to danfitz

Again, the discovery was announced in 1982, and the first treatment was worked out by 1987. Sure there was some early sceptism, but all scientists are skeptcs, and I was suing the treatment right away, as were my colleagues.

I think this was a fine example of how science works, and hats off to the discoverers - who got the Nobel prize, btw.

danfitz
danfitz
in reply to condor39

I don't think the discoverers agree with you. Here are a couple quotes from an interview with one of them as well as a link to the interview itself:

You published a synthesis of this work in The Medical Journal of Australia in 1985. Then did people change their thinking?

No, it sat there as a hypothesis for another 10 years. Some patients heard about it, but gastroenterologists still would not treat them with antibiotics. Instead, they would focus on the possible complications of antibiotics. By 1985 I could cure just about everybody, and patients were coming to me in secret—for instance, airline pilots who didn’t want to let anyone know that they had an ulcer.

…..That happened quite quickly in the end. Between 1993 and 1996, the whole country changed color...…

Based on this experience, should we be taking a fresh look at other diseases that do not have well-understood causes?

Helicobacter made us realize that we can’t confidently rule out infectious causes for most diseases that are still unexplained. By the 1980s, infectious disease was considered a has-been specialty, and experts were saying everyone with an infectious disease could be cured by antibiotics. ……..There are hundreds of diseases like this, and no one knows the cause. It might be a germ, just one you can’t find.

discovermagazine.com/2010/m...

condor39
condor39
in reply to danfitz

Thanks for the reference. It is a good article

jimcaster
jimcaster
in reply to danfitz

Great article! This revives my interest in the gut-brain connection and possible treatment through antibiotics.

danfitz
danfitz
in reply to condor39

I think you are the victim of another mass delusion.

ConnieD
ConnieD
in reply to danfitz

My neurologist just ordered the H.Pylori test for me, he handed me the script as I was leaving and I was a little confused since I’ve never mention

danfitz
danfitz
in reply to ConnieD

Interesting. Did he say why he wanted the test?

ConnieD
ConnieD
in reply to danfitz

He didn’t really say and I was literally walking out the door. He just said he’ll call if it’s positive and said then you will need to take a round of antibiotics to get rid of it. When I looked it up it can interfere with the absorption of meds and seems to be more prevalent in people with PD. He is a new dr. to me and seems to think a little outside the box. I think in the time I’ve been on HU Hbeen mentioned before. I’ll have to do a search

ConnieD
ConnieD
in reply to danfitz

I’m on my phone and don’t know how to attach them but there are two articles from Simon in Science of Parkinson’s on H pylori one in 2016 and another in 2017

danfitz
danfitz
in reply to ConnieD

Thanks much

Hi there, thank you for your knowledge. I was diagnosed 6 years ago at 49. I am on cd/ld , Azilect and Comtan and know I wouldn’t be moving and enjoying my past time , running. I tried thiamin and it didn’t work for me but I am so happy for the people that benefits from it and I’m all for supplements , other alternatives that help or enhance our lives . I am greatful that there is cd/ld out there. I ran 31 miles yesterday and know I couldn’t have completed my race without it. Take care Karen

mannp
mannp
in reply to Kwinholt

When you tried thiamine was it mononitrate, hcl or another form? You can’t purchase the correct formula at the store. Just curious. How long did you try this? I hope you gave it at least 3 to 4 months at a high dose. It seems most PwP that didn’t have success weren’t using the correct thiamine or dosage amount. Others didn’t stay on this protocol long enough. You are the only person I am aware of that it didn’t work for. That is why I raise these questions. Looking forward to your response.

Margie

Kwinholt
Kwinholt
in reply to mannp

Hi there , thanks for asking . Yes it was the HCI and I started with 1000mg for a month and it brought me back to square 1 , so I decreased to 500mg for a month thinking maybe that was too much bc I weigh 96 lbs and still was back to where I could barely walk. That’s how my systems manifested . It wasn’t a tremor it was not being able to move and walk. I stopped taking it and was back to being able to run and walk. I truely don’t ever want to go back and experience not walking and running ever again. It just didn’t work for me. And maybe if I didn’t have to work fulltine and be very mobile with 32 5-6 year olds I might give it more time. Karen

mannp
mannp
in reply to Kwinholt

I’m sorry you had this experience. I understand your reluctance to try again. There are a few people on as little as 200mg. Did you ever contact Dr. Constantini? Good luck to you in the future. I’m assuming you are a teacher. My daughter teaches 2nd grade. I know how mobile you have to be with that many young ones. God bless you. Thank you for your response.

My neurologist just ordered the H.Pylori test for me, he handed me the script as I was leaving and I was a little confused since I’ve never mentioned any stomach issues to him. Apparently some PD people do have it and it can interfere with proper absorption of your meds if positive.

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