Is high dose thiamine therapy effective for people not taking levodopa?

[Manidos]

Hey! My friend was diagnosed with PD ten years ago at the age of 30.

They are not taking levodopa because of the severe hallucinations it causes.

I was looking for alternatives to traditional treatment approach and found the HDT therapy.

I'm currently reading "Parkinson's and the B1 therapy" by Daphne Bryan.

If I understand correctly this therapy "is a co-adjuvant therapeutic measure to use with levodopa therapy".

Does it mean this therapy won't have any effect on my friend not taking levodopa?

They are taking amantadine and pramipexole. Can B1 therapy help?

[kevowpd]

I am skeptical about the prospects of any meaningful sustained success in this situation, but if you are comfortable with the risks or comfortable that there arent any, perhaps suggest it to your friend as something that may help and see what happens?

I would avoid over-promising.

[Manidos in reply to kevowpd]

Hey! Thank you! I guess you're right. I should not over-promise, but it might be worth a try.

[chartist]

Manidos,

People on this forum have reported taking B1 without any levodopa product and reported improvement of symptoms. Given the very good safety profile and low cost of B1, it seems worth a try to see if it can help your friend. Also, HDT has shown in a human study to reduce the inflammatory mediator IL-17 and this is important because IL-17 is at elevated levels in PwP and is thought to promote the disease process. B1 has also shown the ability to lower blood glucose and this is important because PwP have shown increased glucose levels and this can ultimately add to inflammation also. So these are positive aspects of HDT to consider for your friend. Inflammation is one of the driving forces in PD that is thought to promote disease progression, so working to reduce it is a reasonable goal and HDT is one way to do that.

Art

[Manidos in reply to chartist]

Hey! Thank you for the information.

"People on this forum have reported taking B1 without any levodopa product and reported improvement of symptoms." -- this is what I was hoping to hear.

I guess, you're right, this therapy is worth a try,

[Dap1948]

yes, B1 therapy can be used before levodopa meds have been started. I suggest your friend joins this Facebook group where there are quite a few people having success with B1 prior to starting levodopa meds.

facebook.com/groups/parkins...

[Manidos in reply to Dap1948]

It's such a relief to know that there are people having success with B1 prior to starting levodopa meds. My friend does not speak English, but I'll check this group out. Thank you a lot!

[Dap1948 in reply to Manidos]

the book is available in French, Italian, Spanish, Dutch and soon German as well as English. Does she speak any of these?!

Facebook translates automatically too so she will have no problem communicating.

[Manidos in reply to Dap1948]

Unfortunately, she does not speak any of these languages. I suggested her joining the group and she said she would. By the way, I had no idea that Facebook has auto-translate feature. It's very useful. Thank you! I wish you all the best!

[BMichalos]

Hi there Manidos

I have used Levodopa for at least 15 years now and found that it should be regulated by the neurologist and patient working together. You're probably taking too much daily if you are having hallucinations. And other medicines that are added on could be causing them too. I use 7 Levodopa daily every 3 hours and also 1 x Phenedrine 3 x daily every 8 hours. I have a smooth day on this regimen. I have had Parkinson's Disease for many years and started with it very young. Some days are very shaky for no apparent reason but mostly I am able to have a productive day.

Sincerely

Br

[Smittybear7 in reply to BMichalos]

 do you take levodopa by itself? Do you have issues with tremors

[Smittybear7 in reply to BMichalos]

what is phenedrine and how does it help? Thanks for your help. Do you take instant release,controlled release or extended release? Does one work better than another?

[Manidos in reply to BMichalos]

Hey! Thank you for the information! From what I know my friend has awful side-effects even from small doses of levodopa. Maybe it's the combination of meds that causes the issues. I just don't know. Now they are looking for a good medical expert and hopefully things will get much more clearer. I wish you the best!