Thiamine

[guy1947]

Do some people require more than 5 grams of thiamine a day?I'm up to 5 no change yet.I have no balance,no voice sometimes,the balance keeps me from walking.I don't have any tremors,and everything else seems OK except a lot of anxiety. Please help if you can.

[Hidden]

Improvement is likely missed if one is not observant. That is why we take video record and depend on outside observers. Generally over 4 months. First week, no more constipation. One year No more micrographia.

[park_bear]

Agree with Roy it takes over four months to see most improvements except for the constipation. How long have you been taking it?

[guy1947 in reply to park_bear]

I've been taking it since Aug.1,2018,I was wondering if 6 or 7 grams would be too

much too take or is their a limit.?

[Despe in reply to guy1947]

Have you contacted Dr. Costantini?

[guy1947 in reply to Despe]

I've been in contact with Dr. Costantini,sent him video's pull test,writing,

talking,walking, he stopped corresponding with me for some reason.

[Despe in reply to guy1947]

You have to keep contacting him, sending updates every so often. Dr. C. is responding to emails, doesn't sound like him.

[Cons10s in reply to guy1947]

Sometimes less is more.

Just a thought. I’m now doing well with 1000 mg daily with 5 days off each month. Started with 2000 mg for 5 months before reducing.

[Boyce3600]

WOW Isn't 5 grams an awful lot? I have heard that at a certain dosage... don't know the amount, but check with Dr. C.... symptoms actually get worse.

[KERRINGTON]

I think one symptom of overdosing is anxiety. That did happen to me. Check Art Easily's posts. He has amassed tons of info on thiamine/B1, and has recorded people's experiences.

Did you say you hadn't any balance ?

[guy1947 in reply to KERRINGTON]

I used to use the walker,but now with my balance gone it's hard to use the walker.

[Hidden]

guy1947,

I've seen Dr. Costantini recommend as high as 6 grams, but I don't know if that is his maximum for PD. I know in other neurological disorders he goes even higher. Your best bet is to contact him and tell him exactly where you are at at this time. Here is a link to the now standard contact form that you fill out and email to him for quicker and easier responses.

healthunlocked.com/parkinso...

The following link will take you to one page that has all the information that I have compiled regarding HDT that will answer almost any questions you may have about HDT!

healthunlocked.com/parkinso...

Good luck!

Art

[M1tz1 in reply to Hidden]

You're a good guy, Art.

[Hidden in reply to M1tz1]

M1tz1,

That was very nice of you to say!

Thank you!

Art

[M1tz1 in reply to Hidden]

🙂

[tudorwood in reply to Hidden]

Morning Art, my Wife has been on 2 ml Thiamine injection once a week for 10 weeks with no improvement yet, Dr C said to come off it for two weeks, her problem is her balance and speech, she had a tremor in her right leg which is controlled by 3x125 Madapar daily, she’s had a few falls of late one of which she cracked a rib, do you think her speech and balance will improve on the Thiamine?

Andrew B

[Hidden in reply to tudorwood]

Andrew B,

You are a little ahead of me on your side of the pond!

Regarding your questions, first, I would like to reiterate that not everybody responds to HDT, but the majority of testers do get a good to excellent response. The time to initial response has taken months in some PWPs , while some have responded after their very first dose, there is just no current way of knowing until you test it. This is why the videos are useful because people who do not respond for months usually get very slow improvements which are often not realized by the patient, but rather by people who only see the patient infrequently and so are more likely to notice changes from one visit to the next or the changes are noticed once the videos are reviewed. This is a common problem. I am not saying that this is the case for your wife, just putting it out there that this can be a common problem in slow responders. Another useful device is the UPDRS test which also can help measure or determine improvements. As far as the videos, Dr C only needs short videos in order to interpret them, but I recommend making much longer videos for your own use to have much more information to compare how you were to how you are now.

Balance and speech are two areas where HDT has shown the ability to have a positive effect so it is a good idea to keep moving forward in your testing of HDT. Here is a link to almost every symptom improvement that the forum members have reported after adding HDT to their standard PD regimens :

healthunlocked.com/parkinso...

Once you are in contact with Dr. Costantini, you should direct all of these questions to him. I can contact him for you, but that just creates more problems because your information is confidential and he can not tell me anything about your situation with your wife. I am not brushing you off, but what I tell everyone when they have questions is to email Dr. C. whenever you have questions, doubts, concerns or are just frustrated and explain to him what you are feeling or thinking. Remember, he is a neurologist who also happens to have roughly 6 years of experience with HDT in his patients, while I am just some guy on a public forum! He and Dr. Colangeli have said that no question is too small and they will try and answer every email as they are committed to the idea of the maximum number of PWPs having exposure and access to HDT as is possible for them to do! So the best thing is to write Dr. C. and let him know what you and your wife are thinking at this point. Good luck to your wife and yourself!

Art

[tudorwood in reply to Hidden]

Good morning morning Art, thank you so much for your very helpful reply, we are going to start the Thiamine injections again today and hopefully things will start to improve, unfortunately my Wife has quite a few other issues going on with her health, she suffers with very low mood and two years ago ended up in hospital with pneumonia and is still on steroids for that. Thank you again Art, enjoy your Sunday.

Andrew

[Motherfather]

try 3 grams a day 1 gram in the morning once in the afternoon once at night time all with food..then while your doing that try mannitol as well 1 level teaspoon in a cup of water it disolves quickly in water same as thamine.regards john.

[Hidden in reply to Motherfather]

You mentioned Mannitol in your reply...I've been taking 1 tsp with breakfast and lunch for about four weeks now along with B1 but don't see any changes. Could you tell me what I should be looking for to change? Thanks, Pat

[Motherfather in reply to Hidden]

hi pat well that can be a hard one for me i have had pd for about 6 years i exercise 7 days a week im 72 years old i can still brush my teeth write well i get the shakes sometimes in my right arm but its not 2 bad i can cope well i jump out of bed first thing in the morning as well its about attitude i make a point of doing it every morning.then im off walking and doing different exercises.first thing in the morning i take my food then have my meds with it 1 madopar 200/50...1 teaspoon mannitol in a glass of water, one multi vitamen desolved in the water 1 gram b1 thiamine as well a table spoon of apple cider vinegar some honey mix it up and drink it with food.i do that twice a day.the madopar i take 1 four times a day.i started taking sifrol 1 twice a day 0.375mg.so i cope well.regards john.

[Hidden in reply to Motherfather]

You're an inspiration to us all! I hope you'll keep posting how you're doing.

[dadcor]

Consult Dr C, otherwise you get lost. Once you find your “magic” dose, your body and mind will tell you..

[bhurley]

I take B-1 100 MG Gluten Free Once a day. Still lose my voice during the day and balance is still shaky. Is that to much?

[Hidden in reply to bhurley]

bhurley,

Nobody on this forum has reported any improvements from that low of a dose. Fill out the contact form that is available here:

healthunlocked.com/parkinso...

Send it to Dr. Costantini and he will suggest a starting dose for your particular case!

Art

[SilentEchoes]

How long ago were you diagnosed?

Do this simple test, check your deep tendon reflexes. Reflexes are normal with PD. If your reflexes are hyper or absent than it is something other than PD.

The best way to do this is to seek a second opinion and pay close attention to the neurologist. Bring someone with you to observe.

My mother had both knees replaced and even in the late stage of her PD she has normal reflexes.

Best Wishes.