Vitamin B makes dyskinesia worse?

[LauraYu]

I recently started taking vitamin B complex. While I see improvements in my movements, I also found my dyskinesia is much worse. Does anyone have similar experience? Thanks, Laura

[Rocky24]

Hi Laura Yu I hope that you are well? I wonder what your medication is that you are on and what vitamin B supplements you are on too please

[LauraYu in reply to Rocky24]

Hi Rocky, I am currently on combination of 1/2 spoon Zandopa and 1/4 sinemet, 3 times a day.

I am on B1 trial which I have failed many times in the past but still don’t want to give up 😌based on my lessons learned from the past, I created my own B complex to avoid too much b6. I used 1 teaspoon of liquid b complex, which contains:

B1 15mg , B2 12 mg, B3 10 mg, B5 27 mg, B6 9 mg, Biotin 30 mcg, Folate 240 mcg, and B12 26 mcg.

Then I added 200 mg B1, 100 mg B2, 100 mg B3, and 125 mg B5.

With this package, started to see the benefit of B1, reduced muscle stiffness, improved sleep, but the dyskinesia became really bad.

I then tested each B individually, I think it’s either B3 or B5 that caused the dyskinesia. B5 works closely with B1 and B2 in adrenal, it’s important to keep them. Such a dilemma……..

[Smittybear7 in reply to LauraYu]

How do you test them?

[LauraYu in reply to Smittybear7]

I took them one by one each day and observe reactions

[Smittybear7 in reply to LauraYu]

Hope you find some relief.

[LauraYu in reply to Smittybear7]

Thank you!

[LAJ12345 in reply to LauraYu]

Maybe you are missing a different cofactor like magnesium? Or a trace element? Some processes that use the b vitamins also need other factors too. Or possibly the dyskinesia might mean you are over medicated? If the b1 is helping the levodopa might be becoming too much. You are only taking a tiny amount of sinemet with the zandopa so not much carpidopa to stop the levodopa in the zandopa being converted before it gets to the brain.

What type of folate are you taking? Methyl or folic acid? And what type of b12?

My husband takes Hardys daily essential nutrients with added vitamers and it really helps him. 12 per day is the clinical dose. The label shows amounts for 4. The levels of b vitamins are much higher than what you take. He tried less at 9 a day but needs the full 12 to feel as good.

And he also takes extra

B1 x 500

B2 x 25

B3 nicotinamide x 500

Biotin 1000

TMG x 500

Pantethine x 600.

originalText

Hardys.

[LauraYu in reply to LAJ12345]

Thank you LAJ12345 for the detailed analysis!!! You reminded me about my combination of zandopa and Sinemet, maybe the insufficient carpidopa was the root cause of dyskinesia. I will adjust the combination and see.

Over the past two days I did more experiments with b3 and b5. It is b5 actually made the dyskinesia worse, b3 helped reduce tremors, reduce stiffness and my movement is easier. Before I get solution for the dyskinesia issue, I have no choice but to stop b5 for now. Going through your list, I really admire your husband can take that much supplements without reaction. I am very sensitive, I will be happy if I can tolerate even 100 mg of b1 😂 I wish your husband best of luck in his PD management journey!!!and he is lucky to have your support!

[LauraYu in reply to LAJ12345]

Does your husband have dyskinesia? How does he manage it? I went through your list again, I am going to replicate a small dosage one, with similar proposals. I think higher dosage of b1, b3 and b5 makes sense.

[LAJ12345 in reply to LauraYu]

He got dyskinesia when his madopar was increased by the PD nurse, but mainly it caused him to become extremely agitated so he couldn’t sit still and rigid. Given it means he was over medicated did you consider the possibility that the vitamins that a causing you problems are the ones you are deficient in and when you get enough of them you don’t need as much levodopa?

It’s just an opposite way of looking at it, after all the vitamin is a necessary thing for the body but levodopa is not. A person without PD should be able to make it themselves from food with vitamins in it. He takes a lot of pantethine and it seems to agree with him.

Have you had a genetic test done? He had one from opus23 and it is very useful to see a chart of what enzyme processes are impaired andd a list of things to take more of and what to avoid for his genes.

Also I tried to replicate Hardys but it didn’t work and was very time consuming and I don’t think I can replace their proprietary blend . It was a clear benefit when I swapped out everything else with the Hardys with added vitamers. It has all the vitamins in their most natural forms and ideal proportions.

You say b3, b5 b12 and folate but which forms do you have? Vitamins come in different forms. Some brands aren’t the natural form and for some people they won’t work.

Have you tried Trimethyl glycine TMG anhydrous, not Hcl. Sometimes taking extra b vitamins mean you need a methylation source depending on your individual genes and this supplies them.

[LauraYu in reply to LAJ12345]

I totally agree that if B vitamin works for me, then very likely I am deficient. I will not give up on treatment because of levodopa. Yesterday out of desperation I took 100 mg Amantadine, which I have abandoned few months ago because of side effects. I suspect some of the side effects might be vitamin B related. Hopefully I can keep taking Amantadine this time, it works for me. My body is straight and I can work with Amantadine.

I checked the type of folate and b12 that I am taking, they are the methy type. I have also ordered a bottle of TMG. It will arrive today, I have never tried methylation support, hopefully it helps. One question here, why choose TMG instead of SAMe for methylation supplements? Thank you!

[LAJ12345 in reply to LauraYu]

I’ve just read it is good to take it with b3 but this says you can take both

brainmd.com/blog/betaine-tm...

What types of b3 and b5? Hubby takes pantethine and niacinamide and Hardys has quite a mixture. And perhaps you do need some b6 as it is needed for many processes. But it has to be taken away from sinemet so he takes it with food between drugs.

[LauraYu in reply to LAJ12345]

I vaguely remember SAMe interacts with levodopa, let me do some research. Thank you my dear for your help!

[Musicallmylife in reply to LauraYu]

Have you read Parkinson’s and the B1 Therapy by Daphne Bryan PhD?

[Rocky24 in reply to Rocky24]

Hi Laura yu thank you for message. I will look into this problem that you are having with the B1, supplement you are taking?

[LauraYu in reply to Rocky24]

I am also take 1000 IU vitamin D, 500 mg calcium, 150 mg magnesium and 200 mg potassium

[Juliegrace]

I definitely had exacerbation of dyskinesia with B1 supplementation.

[LauraYu in reply to Juliegrace]

Sad us, when I read so many people benefit from B1, I am happy for them, and I am so jealous

[Smittybear7 in reply to Juliegrace]

How much were you taking?

[LauraYu in reply to Smittybear7]

I took 200 mg b1

[Buckholt]

I think it’s been posted here before that B Complex containing B6 should be taken well away from Levodopa doses because of interactions

[LauraYu in reply to Buckholt]

Definitely, not only b6 Interac with levodopa, I also found b6 causing some muscle problems

[Muay in reply to Buckholt]

This study shows that in the presence of an inhibitor of DDC, the interaction of B6 and dopa decarboxlase is negated. Also B6 seems to help in certain populations of PD patients - pubmed.ncbi.nlm.nih.gov/159...

[LauraYu in reply to Muay]

Thank you Muay. I tried b6, a tiny dosage makes me shake terribly, and I actually do notice that my Sinemet is as effective