B1 Testimony

COPY from today, May7, 2021:

“Diagnosed Nov2014. I admit I was dubious, but after some time on B1 I have to concur with Roy; it did improve many symptoms. I can speak more loudly and clearly; swallowing is easier; I simply can do more than before I started taking this supplement. Buttons, turning over, running around with my dog

Definitely helped with constipation. Just visited my neurologist, Dr. Butala at Johns Hopkins (Baltimore, MD, US) who noted some improvement in gait and hand coordination, slightly lessened tremor (which isn't that bad anyway), better pull test results since last visit 2 years ago - when I had just begun the B1.

Importantly,I can feel the improvement and I notice the disease, if it is progressing, is doing so quite slowly. I am not convinced B1 will completely stop progression, but I'd like to be. Credit must be given to finding the right type and dose of C/L. I take 1 and 1/4 tablets of IR 4x/day, with Amantadine the first three times. Determining proper drug regimen took a couple of years.”

Jeff Calvin

[hercules957]

I have been taking the B1 intramuscular 100 mg 1x week for 2 years now. In combination with regular PD medications there is no doubt that B1 has been very effective in reducing my symptoms.

[Lionore]

I’ve been taking Solgar B1 hcl, 500 mg twice daily for three years. My prescription medication hasn’t changed since my MDS added c/ l 25-100 IR three times daily back in 2017 which was one year after diagnosis .I also take Rasagiline. Lately I’m noticing more weakness, slowness and clumsiness about 30 minutes before each dose and more fatigue. I have to fight with myself to get out and walk. Wondering if increasing the B1 might help since MDS is reluctant to increase the c/l because of dyskinesia.

[Hidden in reply to Lionore]

Underdosed C/L

[Hikoi in reply to Lionore]

Sounds like your neuro needs educating.

[rescuema in reply to Lionore]

"MDS is reluctant to increase the c/l because of dyskinesia."

Try citicoline.

healthunlocked.com/cure-par...

[Lionore in reply to rescuema]

Rescuema, thanks! Per a more recent thread, just ordered Citicholine, 1000 mg. I’ve been eating steamed fava beans every day, on salad, which is giving me less extreme off times. I’m so grateful for this wonderful group!

[chartist in reply to Lionore]

Lionore,

Most of the Citicoline I looked at were either 250 mg or 500 mg capsules with a few at 300 mg capsules. Most of the ones that I saw that said 1,000 mg, when you read the label on the back is really 500 mg capsules and they say the serving size is two capsules to make the 1,000 mg. I feel it is a little misleading on their part. They should just say on the front of the bottle that they are 500 mg capsules.

Please let us know how Citicoline works out for you!

Art

[Lionore in reply to chartist]

Will do!

[chartist in reply to Lionore]

Hi Lionore,

Have you ever taken a break from B1? You've been on it a long time (3 years) and some members have reported that a break every now and then is needed to keep from overdosing. The B1 seems to have a bit of synergy with C/L and some members have reported being able to reduce their C/L dose after adding B1 to their regimen.

Dr. Costantini said that if you've been on B1 for many months or years, you should be able to stop for a week with no problem. It might be worth seeing if stopping for a week causes improvement in symptoms. If it does cause an improvement, he said that means the dose is slightly high and that you can take a week off every 3 to 6 months or slightly reduce your B1 dose by possibly skipping one day a week.

If you decide to test this idea out, it would be better to do it before starting the Citicoline because if you do both things at once, you won't know which one is doing what for you.

Art

[Lionore]

Interesting idea. My dose is 500 mg twice a day. Can’t hurt to skip it for a week.

[chartist in reply to Lionore]

Lionore,

I discuss this issue here :

healthunlocked.com/cure-par...

Art