Need B1 Advice

[mgregor6]

I started taking B1 HCL about a year ago, but started slowly on lower doses to play it safe. 100mg with each of my 3 daily doses of PD meds. 200mg the following week. 300mg the 3rd week. However, with 400mg & then 500 mg symptoms began to worsen so I returned to 300mg. Should I skip a week taking B1 and then start up again with 500mg or more? I've been reading here that starting with large doses is what you're supposed to do to maximize the effect. What do you think?

[bepo]

Actually, lowering the doses works many times when symptoms get worse. Are you keeping a log? We work at staying with the dosage for about a week, and then we raise up by 50 mg powder. We are now at 150mg am and 100mg pm. Tremor and lip tremor have improved. We will watch this dose for 5 days before making any changes.

[mgregor6 in reply to bepo]

Appreciate your input, bepo...

[Erniediaz1018]

That’s right, start at higher dose, 4 grams and reduce as need be.

[mgregor6 in reply to Erniediaz1018]

Thanks much, Erniediaz1018

[bepo in reply to Erniediaz1018]

What if your symptoms are mild? We tried the 2 gram dose, and I could see it was going to take a long time to get to the desired dose. So, we started with 100 mg, then went to 50 mg. I would think if your symptoms are mild, you would start with 50 or 100 mg. then keep raising it by 50 mg.

[chartist]

In the context of what Dr. Costantini was doing, he would start with the highest dose he thought would likely be effective for the patient based on their symptoms, weight and length of time since diagnosis and based on his experience with many patients over the past 6 years or so.

Two possible reasons he started with a higher dose is because he has a tremendous amount of experience and was good at choosing the initial dose based on the above and then adjusting it accordingly based on the patients response. Another possible reason is because he started seeing that some people responded very quickly to HDT/B-1 while others responded very slowly. When the response is very slow, some people would give up because they were not seeing quick results. By pushing the dose toward the high end of what he thought was the proper dose range for a patient, that dose was likely to show the quickest results and once a patient saw at least one positive result, it makes it much easier for the patient to continue testing HDT/B-1.

He said starting at a lower dose and working your way up slowly will also work, but it generally takes longer and he knew that the longer it took to see results, the greater the chance that the patient would give up. Some people have reported positive results on their first day of dosing while others have reported zero results for 7 months and then results started to appear one after the other.

Art

[bepo in reply to chartist]

We started out at lower dosages and have seen improvements. His tremor and lip tremor are where our main focus is. The non-motor are hard to notice. He has had PD since 2014-2015 and has been on mucuna and supplements. He is basically in excellent shape if it weren't for PD.

[chartist in reply to bepo]

' He is basically in excellent shape if it weren't for PD. '

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

That seems to be going around a lot on this forum. 😉😉😉

Art

[cmichie in reply to chartist]

My husband B12 was off the charts and the doctor said not to take any B for several months until this came down what do you think of this??

[chartist in reply to cmichie]

If he was taking a lot of B-12, then of course his testing could be high. If it is still high after being off B-12 for the several months, then your doctor can look for other causes such as kidneys that are not fully excreting B-12, liver issues and a specific form of leukemia. Your doctor should test for all of the possible causes if his B-12 is still high after several months.

Art

[cmichie in reply to chartist]

It was the supplement so he got stay off B vitamin for couple more months

[cmichie]

Yes he will test again