Using B1 therapy

[Parkwarrior]

HI, Everyone. I'm hoping you can help analyze our problem.

My PwP was diagnosed 2 years ago. He has never taken prescription medications for PD. He started on sublingual B1 in November ’22 at one tablet a day. After 2 weeks we gradually saw some improvements. Then in January ’23, he showed overdose symptoms, so he stopped then restarted two weeks later with one tablet every other day. Then a month later, he stopped again due to overdose symptoms and restarted with one three times a week. Eventually, over time, he was down to ½ tablet three times a week, and he seemed stable with that for several months.

Last August he began showing signs of increased fatigue, an unpleasant “jittery,” restless feeling, and a loss of balance. He stopped and restarted the B1 again with ¼ tablet, but after no improvement finally stopped the B1 completely in late Sept. He has remained somewhat restless, and his balance has worsened. Lately, he has episodes of freezing that scare him. I believe anxiety has perhaps always been his most serious and troublesome Parkinson’s symptom. The B1 was a big help with that, but now the anxiety has returned, although not as bad as before.

He has enrolled in Rock Steady Boxing, the exercise program for PD, and he has gone three times a week for over two months. It’s rigorous, and we’re both glad he’s doing it, but we haven’t seen any specific changes because of it. What is puzzling is that he can exercise at boxing for an hour with no bad effects except ordinary tiredness yet on another day can’t walk a short distance without losing his ability to coordinate his feet and falling forward. Is this inconsistency of symptoms typical?

He is thinking of trying levodopa as soon as we can see a new doctor, although our appointment is not until late January. I am worried that all the benefits of B1 are being lost in the meantime, so he is going to try one-quarter tablet once or twice a week, and we’ll see what happens.

Does anything about his B1 experience sound familiar? Would using the capsule form of B1 enable him to continue using it? What have other people done in similar circumstances?

[Gallowglass]

High dose b1 and Carbidopa levodopa treat different symptoms. So if your dr says to take C/l chances are hubby will get some relief. Nothing works great nothing works all day and all night. I don’t use B1 because it did not cause improvement. I do use c/l and time it so that I experience relief at important times of day. I also do Rock Steady boxing which helps balance and mood a lot.

[Parkwarrior in reply to Gallowglass]

Thank. you, Gallowglass. It's a learning experience!

[goldiewan]

Personally, I am on 500 mg thine HCL daily plus a minimal amount of levodopa/carbidopa. 25 mg every three hours. There are definite benefits to the B1, but I do seem to require some additional dopamine in my brain. I also use Macuna mixed with green tea, which works for L-dopa effect. (500-600mg per dose).

[goldiewan in reply to goldiewan]

I should add that the macuna is now replacing more of the medication but both seem to do the job

[Shililly in reply to goldiewan]

My neurologist is skeptical about Macuna…..how does it work, does it interfere with L/C? How do you know how much to take? Is it oral pill? What is dosage? Thanks

[goldiewan in reply to Shililly]

First he should find out if levadopa/carbadopa helps, and establish the minimum effective dose. Also having a Dat scan and MRI can help with correct diagnosis. Macuna contains l-dopa. In varying amounts. Green tea helps it cross the blood brain barrier according to some studies, also in my personal experience but I don’t think it’s a good place to start necessarily. Best of luck!

[Parkwarrior in reply to goldiewan]

Thank you, goldiewan. I think B1 is supposed to be used along with LC, so we'll see if it helps.

[pdpatient]

You should see a Movement Disorders Specialist otherwise known as MDS. Parkinson's is very slow progression though relentless. What is a little concerning about your description is that the progression of the symptoms appears to be atypical. The symptoms that you describe are not usually manifested so early in the disease.

I would highly encourage you to seek specialist opinion in order to rule out other potentially differential diagnoses.

Good luck and God bless..

[Parkwarrior in reply to pdpatient]

Thank you, pdpatient. He has already seen a prominent PD specialist, and we'll be going to another in a couple of months. We'll see what he says.

[M-o-ggy]

When using B1 the body needs extra minerals. I think it is called 're feeding' syndrome. I take good quality multi mineral/ big supplement every day. It stopped the jittery feelings for me. Try searching B1 on this site

[Parkwarrior in reply to M-o-ggy]

Thank you, Moggy. He takes minerals and balances the other Bs.