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kimcvi (@kimcvi)

Myotonia Congenita

Neuropathy | Last Active: 1 day ago | Replies (151)

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@avmcbellar

@rwinney, Rachel thanks for the information. Unfortunately, I am no longer on facebook to be aware of Protocal. I did hear from the manufacturer but I was disappointed with their advice to contact my physician. Seems like an easy way out. I plan to continue with trial and error until I find the right solution for myself. I want to avoid medications. I will follow up with Protocal, the supplement John recommended. How is your photophobia, decreased any after the opthalmology visit?

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Replies to "@rwinney, Rachel thanks for the information. Unfortunately, I am no longer on facebook to be aware..."

Hi @avmcbellar, Although the Protocol group primarily uses Facebook for support and questions, they setup a website for ordering their new Protocol 525 product which reduces the total number of pills we had to take daily. The website still has links to order the original products from Amazon and they also have instructions for ramping up on R-ALA since it does cause issues for most people when they start the high doses. Here's the website – https://solutions2pnpd.com/ The instruction page is listed at the bottom and includes the original vs 525 product comparison as well as the instructions on how to ramp up on the R-ALA.

No, not really. Photophobia ties into migraine for me also which has been triggering again recently.