A friend's successful use of high dose thiamine

[DaisyMakepiece]

Four years ago I first posted here, when I was helping out a friend who had recently been diagnosed. She'd had problems for a long time before that, with loss of smell at least 8 years ago.

In the past four years, with HDT, she has improved, and the Parkinson's has never progressed. Some people don't believe she ever had Parkinson's. She does, and still takes levodopa/carbodopa. Her psychiatrist, who is also a neurologist, doesn't believe she has it. She continues to have a small tremor and some balance problems but just the fact that she's never gotten worse is a confirmation that Dr. Costantini was correct.

Maybe this testimony will help others decide to try it.

[Boscoejean]

it is too bad that this does not work for everyone but it sems worth a try

[park_bear]

Evidence of the importance of early diagnosis and HDT treatment.

[evenshoshan]

That's very encouraging, great stuff. What type of B1, brand, dosage and sweet spot ? And any particular lessons learnt ?

[DaisyMakepiece in reply to evenshoshan]

She uses Thiamine HCL, Solgar and Nutricost brands I think at different times. Her dose is very unusually high. The big lesson we've found is that Dr. Costantini's observation that when symptoms return after being absent for a time, lowering the dosage slightly, or stopping altogether for a few days and then restarting, works well and it means a general reduction in dose is required. Possibly it means that some neurons have started working again.

The website run by Dr. Costantini's partner is highdosethiamine.org/ . It contains pretty much all the information you need.

[DaisyMakepiece in reply to evenshoshan]

This is a summary of the protocol, per Dr. Costantini:

There is a period of trial and error in finding the right dose of thiamin for any particular Parkinson’s patient.

Start dose at 1000 mg. (Italians ordinarily take 4000 but Costantini found Anglo-Saxons needed about half.)

Must be taken in two doses, both before evening, i.e. breakfast and lunch. Taking it later may cause extra energy that interferes with sleep.

Reduce magnesium to 400 mg as thiamin increases peristalsis.

If jitteriness occurs or symptoms worsen, the dose is too high.

When symptoms get worse, cut the dose in half and wait three days to make sure symptoms return to baseline or are improved. If the pull test isn’t normal, increase the dose.

The right dose is the one that normalizes the pull test.

Costantini suggests that hard liquor not be ingested but wine is okay.

[evenshoshan in reply to DaisyMakepiece]

Many thanks for that useful information.

[Farooqji]

thanks for the information. How much dose and what type of thiamine is she using.

[Edge999]

does she also do anything else like a vegan no sugar diet? Any other supplements?

[DaisyMakepiece in reply to Edge999]

When you take high dose thiamine, magnesium should be taken as well. I believe 400 mg was recommended. Otherwise, her diet is all over the place.

[Dabaa]

Happy for your friend. I haven't been able to make it work - dosing issue.

[Gmanblue]

what kind of B1 is your friend taking? I m in North NEW JERSEY USA

[EdAllentown]

I have been taking B1 sublingual 100mg for close to a year. I get it on Amazon for $7.00 for 100.

My handwriting came back, no tremors and fine motor control is normal.

It has NOT done anything for my balance or walking.

[Millbrook in reply to EdAllentown]

Maybe you can try the probiotic PS128. It helped normalise my husband’s balance , spatial judgment and frozen facial muscles

[evenshoshan in reply to EdAllentown]

What is your daily dosage of B1 sublingual please ? And how long did it take you to find the right dosage for you, i.e. the "sweet spot" ? If I do choose to go down the HDT route with B1 sublingual, what dose should I begin with ? Many questions because I'm excited to begin.