current neurologist exam

Today I returned from exam by my neurologist. Walk and turn test? Passed. Pull Test? Passed. Next appointment in one year. Today my neurologist broke from his resistance and said he will look into thiamine hcl. My neurologist said carbidopa levodopa is not useful with tremors. He said its function is to get you moving. I am trying to post today's pull test video. Watch for it.

[Hidden]

WTG, Roy!!!

It is great news that you got your neurologist to open up to the idea that HDT may be a little more than helpful for PWPs! One down, how many to go!!! 😊😊😊

Art

[rebtar]

Fantastic news! Interesting what he said about tremors. I found when I started Sinemet, my tremor dissappeared. It wasn't severe, though.

[Syncletica]

This is wonderful news! Thank you for sharing!

[WinnieThePoo]

Congratulations - great results. I confess I have a problem here. I have monthly neurologists appointments on my clinical trial, and my pull test is perfect, as is my walk and turn test (left arm swing is not naturally normal, but I can fake it). So where would I look to set an initial thiamine dose?

Also - whilst I am not on Sinemet (or any similar medication) I can assure you it is effective for tremor. My Dad is probably stage 2, and had tremor as an early symptom - and his tremor was so well controlled by Sinemet he was adamant he didnt really have PD. He is 85 and has just had surgery for bowel cancer, which bled first time, and meant a 2nd operation the following day. He lost 6 pints of blood, and was in ITU then HDU for 6 days.

Off meds. Which was very distressing for him and those visiting him as he was jerking twitching and shaking (and gurning) in bed, drifting in and out of consciousness. We persuaded the nurses to supply Madopar through his feed tube (in his nose) and he is completely calm and tremor free (and recovering - slowly - awake and talking coherently)

[Hidden in reply to WinnieThePoo]

Therapeutic dose is 2g in the a.m. and again in the afternoon. Often people report a reaction to vitamin. This shouldn't be according to webmd description.

[WinnieThePoo in reply to Hidden]

2gm AM and PM 4gm per day, even though I am not Italian, and have a perfect pull test on my current dose of zero grams? Is that right?

[jimcaster in reply to WinnieThePoo]

I'm glad you asked, Winnie.

In my opinion, the answer is an emphatic "NO". I'm frustrated that 4 grams keeps getting touted as the "therapeutic dose." For the vast majority of us, particularly the recently diagnosed, it's way too much.

[PDGal4 in reply to jimcaster]

Dr C recommended I start with 1000 grams first thing in the morning, stressing that if at anytime I felt worse, to stop immediately (and contact him). It was a sign of too much.

[Hidden in reply to jimcaster]

Yes, Jim, I understand what both you and Roy are saying. Roy refers to 4 grams as a therapeutic dose because that is the dose that worked therapeutically for him, but HDT dosing is "very individualized" for each patient ! Roy is weighing in around the 190 pound area and had very significant symptoms when starting on HDT. One size does definitely not fit all PWPs and if you think you are going to come in weighing 120 pounds and take 4 grams of B-1 to good effect, you will almost certainly be very disappointed and likely to have a worsening of symptoms in short order or at least that is what I have seen happen often enough to know that there is no standard dose when it comes to HDT as Dr. Costantini has clearly stated on the HDT FAQ page!

Art

[WinnieThePoo in reply to Hidden]

Thanks Jimcaster for the advice. I remain interested in thiamine, but find the confusion of advice on this forum quite a barrier to entry, along with the apparently erratic results forum members are experiencing. I am sure I recall a post in which Roy said, words to the effect of "You'll know your dose is right when your pull test is right" - and videos of pull tests were one of Dr C's diagnostic aids. Like I said - mine is perfect (cos I'm early stages) and my Thiamine dose is Nil (actually a bit more than NIL - I take a B complex supplement. But nowhere near 4gm). Whilst there is lots of advice about HDT, it is not consistent (particularly the ad-hoc " HDT" as a response to every question about PD).

[Erniediaz1018 in reply to WinnieThePoo]

Thank you for sharing. Way to go @ 85 very strong man and passed down to strong family. Great that you stick together.

[KERRINGTON]

That' great, AND THANKS ! I started last year around Feb/March. It was all your posts and emails to Dr C, way back when, on althiamine, benthiamine, b1 then which got me interested in trying HDT....BTW my L-dopa mucuna extract helps my tremors.

[Cons10s]

Thiamine and Mucuna have given me an almost normal existence. I’m doing everything, mall shopping, cooking, restaurants, traveling, working, client appointments, etc.

The most recent add to my protocol has more than boosted further improvement. It is this most wonderful drjoedispenza.com/

It’s the best $230 bucks I’ve spent. 30 hours of intensive training in meditation, to learn to change your brain. It’s science, fact, and entertaining.

You may remember I previously posted the NIH report where a man with PD was later Parkinson free after years of meditation.

[Pilot108 in reply to Cons10s]

What is your dosage of B1 and Mucuna and what do you weigh

[sudoku123]

Roy,

Glad for you.

[Gioc]

Roy I am happy for you, that's all. Dr. C will be happy to hear that. As far as I know, his only concern has always been to help the sick and this will make him happy.

[Kattripp]

So happy for you!

We had a similar experience yesterday with our new MDS...perfect pull test and he took our research info on HDT!

We must keep speaking up to our physicians as some will be open-minded and really listen!

So glad we changed Dr’s and look forward to a great working relationship, so important with a chronic disease.

Thanks for the update!

[Hidden in reply to Kattripp]

Kattripp,

I think you and Roy have just put a big smile on Dr. Costantini's face because you guys have done exactly what he wanted by letting your respective neurologists know that HDT is the real deal and you are the living proof!

Thank you!!!

Art

[Stevenmast]

Congratulations Roy on your positive results on both test!!! I am just curious, when you go to the neurologist are you taking your medicine protocol or off?

- Steven

[Hidden in reply to Stevenmast]

Steven,

I know at least for the "push test" in his office, Dr. C has clearly stated that he wants his patients "on" because performing that test while "off" will not give reliable results. I believe he performs a push test at each visit.

Art

[Hidden in reply to Stevenmast]

I take my med before the visit

[Millbrook]

So happy for you Roy

[Hidden]

youtu.be/ccVizY3jgZM(Not working as expected?)

[TL500]

Hi Roy, how long have you been on HDT?

Does it help with your tremor? Thanks.

[Hidden in reply to TL500]

Tremor remains a problem

[TL500]

How long have you been on HDT? Thanks.

[Hidden in reply to TL500]

More than twelve months

[TL500 in reply to Hidden]

Thanks Roy.

[danfitz]

My neurologist likes all b vitamins. I am surprised by the comment about c/l. Did he elaborate? Tremor was the first symptom I noticed and c/l’s control of it was the crowning blow in my diagnosis. Did he say what he thought was better?

[Hidden in reply to danfitz]

He was brief

[OREOLU]

I also saw my MDS yesterday.I told him about high dose thiamine hcl,He denied knowing anything about it's effectiveness in treating PD as regards slowing progression.He said thread softly, if I am considering this treatment.He said all medications have its trade off,including supplements.What I don;t understand is,why would all those research foundations not fund Dr Constantini's study?

[Hidden in reply to OREOLU]

Where is profit? B1 not patentable.

[OREOLU in reply to Hidden]

You've got it. It's so sad,everything is about money.The best we can do is to keep hoping,probably things will change.

[SeaPearl]

That's good news!! I'm really happy to hear that. Keep going.