B1 Therapy question

[jalapeno1]

Six months ago, my neurologist diagnosed me with early stage PD. My prominent symptoms included hand tremors and stiffness. I am on a low dosage of sinemet and it has helped to regulate but not eliminate those symptoms..

I was very intrigued by the testimonials in the book, Parkinson's and the B1 Therapy. On a recent visit with my neurologist, i shared about this adjunct vitamin therapy.. Since there hasn't as of yet, been a full-fledged clinical study (double-blind and placebo-controlled), he was very hesitant to recommend that i try it.

Since there aren't any clinical study conclusions about particular side effects of HDT, he felt that there could be risk of some adverse side effects that haven't been reported yet. He specifically mentioned things like possible neuropathy or impacting the balance and levels of other B vitamins.

My question is, has any of you experienced one of the above side effects after HDT or have you heard any report of someone else having done so?

I am very inclined to try the B1 Therapy. Thanks for reading my post!

[chartist]

Peripheral neuropathy can be contributed to by too high or too low of a level of B6. A B1 level that is too low can also be a contributing factor. It seems like your doctor is not really familiar with B1 therapy. It has been used and discussed at length on this forum for over 7 years now.

If you use the forum search feature in the upper right section of this page you can find plenty of discussion regarding B1 in several forms. It seems to help the majority, but has not worked for all of the forum members.

Ask your doctor to compare the known side effects of Sinemet compared to B1 and that should clarify a lot for you.

drugs.com/sfx/sinemet-side-...

drugs.com/sfx/thiamine-side...

Art

[jalapeno1 in reply to chartist]

Thank you, for taking the time to advise me. Great points and direction!

[chartist in reply to jalapeno1]

At 7 years in to B1, this forum might be considered a type of study for the use of B1 specifically in PwP. The current consensus seems to be that B1 has a good safety profile at the doses that have been reported on this forum for PD. The effective dose range that has been reported is as low as 25 mg/day up to over 4000 mg/day.

Here is some info that may help you get started :

healthunlocked.com/cure-par...

Art

[Astrojupiter]

He is probably right that in a large trial side effects not previously known will become known. In fact it is common for more serious risks to become apparent even after years of use after a drug has been approved. Many doctors for this reason do not like to be the first to try new drugs.

There is no treatment that slows down progression in a placebo controlled trial. The side effect of trying nothing except what your doctor suggests is the disease will progress, slowly or quickly unless you are very lucky.

I am trying B1 in hopes that it might be disease modifying. I do not know that it is, but it is worth the small risk of harming myself today for what may be a profound risk down the road.

Many people who has surgery today pretty much take that kind of risk. But those risks are often more defined.

There is no money in studying B1, and these types of treatments tend to get few research dollars. Good science is slow.

[Gioc in reply to Astrojupiter]

Times change:”Burke Neurological Institute Receives a $45 Million NIH Grant to Study a Vitamin B1 Precursor for Treatment of Alzheimer’s Disease in Multi-center Clinical Trial

NEWS: Press Release

July 7, 2022”

burke.weill.cornell.edu/gib...

[Gioc]

Hi jalapeno,

Thiamine was discovered over a hundred years ago. There are hundreds of studies now on side effects that are ultra well known.

It has been used for a long time in human for other diseases and deficiencies than PD .

[Ghmac]

If you stay with this group long enough, you will find that most PWP don't feel they are being well served by the medical profession, especially neurologist. Many have decided to investigate an alternative approach which includes diet, exercise and all types of supplements, mostly without the approval of the doctor. Unfortunately, western medicine has little to offer for PD, and what they have addresses symptoms not the disease. I see the majority on this feed working hard to slow the progression, sharing what works, and contributing the latest news, science and studies. You will find much more information and support here than at the doctors office.

[Oneworld23]

There's a lot of information, suggestions and PWP's experiences on the Parkinson's B1 Therapy Facebook page,

[RoseFlowerDew]

I’m sorry for popping into this forum but I wanted this community to be aware that b vitamins and neurological issues are discussed from time to time on the Pernicious Anemia Society forum along with frequent discussions on pins and needles and homocysteine. It may be related to you as a community because b vitamins taken individually without awareness of the delicate balance may cause problems later much like vitamin d, calcium and magnesium need balancing. Also to let you know that medicines can cause vitamin deficiencies that cause problems as well. On the PA board Suzy C’s book Drug Muggers is referred to regularly over the years.

[gwendolinej]

My husband’s neurologist said of B1 “ try it. We have nothing that stops the progression of the disease. Vitamins and supplements are not researched as there’s no money in it.”