Thiamine hcl update: I have been on... - Parkinson's Movement

Parkinson's Movement
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Thiamine hcl update

Celtis
Celtis

I have been on thiamine for just over three months ( 7x300mg tablets a day, i e 2.1g). We sent the third lot of videos ( of walking, talking and the pull test) to Dr Costantini. I knew I was better and I could see from the videos that things were improving. I have had much more energy and, more importantly, my depression has gone off. I told him that. BUT my tremor is worse and my handwriting is still degenerating ( not too bad however) so I thought maybe he would change the dose.

He replied straight away. He said he was pleased with the progress and said I should continue as before but after a month I should stop for a week before taking it up again.

He asked me to send a list of the medicines I am taking. I did that and again I had an immediate response. I was taking half 25/100 carbilev three times a day and he said that was too little. He said take a whole tablet in the morning and another at lunch. I have emailed again to ask if that is all I should take.

When I think of the abrupt, compassionless neuros I have seen and the despairing diagnosis they all gave ( not one even mentioned things you could do like diet or exercise) I am more grateful than ever for these wonderful doctors. They don't charge and they answer a query within hours. I had to wait days before my original neuro phoned back.

We are so lucky to have found them!

33 Replies
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I'm very happy and that's that! :-)

Celtis
Celtis in reply to GioCas

Thanks. Me too!

Congrats on the improvement. Keep up the good work with thiamine, diet, exercise, and with Dr. Costantini.

I am all for the whole B1 thing and i have seen that alot of people are feeling better taking it but i dont think its a good idea for the Dr C to be changing doses of anyones C/L that should be discussed with your neurologist or PD nurse

this is just my opinion

Hidden
Hidden in reply to RS313

RobynS,

On the other hand, what do you do if you ask your neurologist to adjust your sinemet dose to optimize benefit between it and the B-1 and he has no idea how to do that because he/she knows nothing about the usage of B-1 in PWPs? Judging by replies on this forum and my experience with my friends with PD, doctors, neurologists and movement disorder specialists are not familiar with this use of B-1 for PD let alone how to use it with sinemet for optimal results. Dr. Costantini is a neurologist who very likely is the world's foremost authority on the use of B-1 in combination with sinemet as applies to PD with over 2,500 patients treated.

It won't hurt to ask your neurologist or MDS, but it is hard to give a good answer about something that you have no experience with, in which case you still have Dr. Costantini to fall back on, at least for now!

Art

RS313
RS313 in reply to Hidden

Good point

Niggs
Niggs in reply to Hidden

Plus, what happens at a regular neuro visit anyway ?

My symptoms are not controlled = up the meds

Side effects are a problem = reduce meds

Is there anything else I can take = no

we'll send you an appointment in 3/12 which in the uk must be code for 6 - 9 months.

Every time I've seen a neuro in England I've sat waiting for up to 2hrs for a 10 min consult that could've been done over the phone !

Rosabellazita
Rosabellazita in reply to Niggs

I agree

SFLR
SFLR in reply to Niggs

So true

Despe
Despe in reply to Niggs

No better in the US! Yearly appointments, some times after 6 months. In the meanwhile, we suffer. :(

jimo2017
jimo2017 in reply to Hidden

how do you contact Dr costantini

healthunlocked.com/parkinso...

Buckholt
Buckholt in reply to Hidden

I mentioned B1 to my Neurologist a few weeks ago and he knew nothing about use in PD. However, he said it was not harmful and was quite happy for me to take it and was interested to hear how it get on.

Maltipom
Maltipom in reply to Buckholt

My MDS did the same. Said he hadn't heard about it but saw no harm in my using it especially when I told that was prescribed as a supplement to my regular PD meds.

Celtis
Celtis in reply to RS313

My original script was 3x25/100 carbilev a day. On Dr Costantini's advice I am taking two and a half, so I reckon it's OK. And my neuro seems to know nothing outside of pharmaceuticals.I don't think he is all that wise.

Tmarsella
Tmarsella in reply to RS313

Neurologists mostly dedicated to FDA for CYA protection. They would be wise to LEARN from Dr. CONSTATINI in every detail for he is dedicated to the PATIENT'S recovery.

Osidge
Osidge in reply to Tmarsella

UK neurologogists are not dedicated to the FDA!

I am also so thankful for having found this wonderful human being, Dr. Costantini. He so selflessly provides help and hope to all who entrust him with their health. I said it before and I will say it again: A RARE BREED!

My husband, Dave, started the B1 therapy with Dr. Costantini's help about 5 weeks ago. I just communicated with Dr. C yesterday and as usual he responded very quickly. He said to double Dave's dose from 2 grams per day to 4 grams. He has shown some improvement in energy and has started to do some paperwork and pay bills, communicate with our office, read a magazine - something he has not done since his histamine reaction last fall (see my profile for the boring details). However, he just can't get the sinemet dose right. And our neuro is not much help.

Celtis
Celtis in reply to kgold

I whatsapp the videos to my son who has an iphone and he sends them as an email.

GioCas
GioCas in reply to Celtis

good idea, have the son doing it, but also use whatapp which reduces the size of the video file it is good too😀

Erniediaz1018
Erniediaz1018 in reply to kgold

Use a computer

RoyProp
RoyProp in reply to kgold

4g daily for the past nine months works for me. Watching others on lower dose, I have thought to try lower.

very similar reaction- more tremor despite other benefits,, He advised i drop to 500mg for 3 weeks, and get back to him then... i don't take c/l, but do take a dopa agonist

I asked several neurologists about B1. I even told them about the research carried out by Dr. Costantini. All said: thiamine has no use in PD.

Unless large, randomized-controlled studies are done to show the unquestionable efficacy of B1 in PD, so that it would be imperative to incorporate it into current treatment guidelines, I suspect most patients will never get thiamine. Most will not even know about it. Now, let's also not forget the fact that, as a naturally occurring substance, which cannot be patented, thiamine cannot bring lots of money to any company / person, like Requip or Azilect does. Hence, it is highly unlikely that such studies could be done. No pharmaceutical company will ever fund it. Universities, maybe ..

Unfairness, pure and simple.

Osidge
Osidge in reply to MehmetKutlu

It is not just the initial and mid-term effects of a medication that are important. It is the long-term effects on the body as a whole that are very important.

MehmetKutlu
MehmetKutlu in reply to Osidge

Exactly. Well-controlled (ie, double-blind randomized) large studies to be carried out by foremost Neurology scholars from major Universities should not only define any benefit very accurately, they also last at least 2 years. Hence, long-term efficacy of B1 could be assessed. Moreover in most cohorts, patients continue to be followed for extended periods of time long after termination of the study. 10 - 20 year effects of some drugs are known.

It is also possible to test thiamine in early PD to see whether it prevents or slows progression over long term.

Dr. Costantini's research is respectable and provided benefit to many including me, but it is not enough to change standard practices. I am sure at least % 90 of the neurologists have never heard about it. What we need is big research from first class institutions. So that:

1. Thiamine benefits are proven for sure and quantified. Subgroups, if any, unlikely to benefit might also be defined.

2. Thiamine enters PD treatment guidelines as a Class I recommendation. Hence no neurologist could say: "This is useless / unproven".

Thank you for sharing your experience with Dr. Costantini and it. B1.

I too feel lucky but have no results. Perhaps I will learn something from you.

Blessings!

Keep at it..I started in March 2018, floundered a lot, still floundering, but getting significant help from it. Began with 2000 mg 2x day, now on 500 mg 3x day, sometimes need more, feel worse when without it.

ion_ion
ion_ion in reply to KERRINGTON

I started the same time. I made an experiment by stopping it for almost a week and the things went bad; I went back to 2g/day and it is much better.

Hidden
Hidden in reply to ion_ion

A good thing about B-1 is that temporary breaks don't hurt anything in the longer time period and if the idea that the disease does not progress as long as you are taking it turns out to be correct, even better! Granted, in this case, longer time period means 5 1/2 to 6 years since that is the longest that people have been on high dose thiamine and not shown any apparent progression, but who wouldn't want at least 5 years with no disease progression with the possibility of no disease progression ever? For people who are able to start B-1 early on in the disease process, that could be a really great thing!

Art

Celtis
Celtis in reply to Hidden

Ah indeed.I feel so thankful to have found B1 early in my journey. Even the possibility of the disease not progressing gives one hope and something to fight for. Placebo effects are so well documented that they are always taken seriously. No one seems to have told the neuros that the despairing story they tell can actually make the patient worse - the placebo working in a negative way.

GioCas
GioCas in reply to Celtis

Let's not forget that PD has motor and non-motor symptoms. Non-motor PD symptoms, ie fatigue, dementia, intestinal disorders and bladder disorders are not very much subject to the placebo effect and the rates of improvement are well beyond the placebo thresholds, so any professional examining the results of b1 I doubt he can talk about placebo. Since the use of levodopa does not affect the non-motor symptoms only for these the b1 that improves them should be prescribed for my opinion.

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