So I'm symptom free . . . Are you not curious? - Ataxia UK

Ataxia UK

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So I'm symptom free . . . Are you not curious?

sunvox profile image
21 Replies

So, I have no symptoms, but my CAG count says I should be using a walker or worse. Are you curious?

healthunlocked.com/ataxia-u...

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Also, some people with SCA1 and SCA3 are following my ENTIRE regimen and reporting the same results. SCA is a death sentence. I, for one, can't comprehend not trying everything.

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sunvox profile image
sunvox
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21 Replies
Namitaytrev profile image
Namitaytrev

Hi Joe- have you seen the info on the PONS device and if so, what are your thoughts?

pinjem profile image
pinjem in reply toNamitaytrev

This looks very interesting!

sunvox profile image
sunvox in reply toNamitaytrev

Hi Nami -

Yes, the science is similar to the light stimulation devices. It works to repair damage, but it can't help prevent decay which in my theory of alternative treatments is very important.

Mkite profile image
Mkite

Thank you so much Joe for all your research and information. My daughter's doctor (a functional doctor) agreed to put her on 1 g of thiamine. Hopefully she will try some of the others as well. So happy for you and your beautiful family!

sunvox profile image
sunvox in reply toMkite

Hi M- I hope you'll report back no matter what. Thanks for the info! Joe

Rhiny99 profile image
Rhiny99

Joe, thank you for your research. I always look forward to your posts.

Blueginger profile image
Blueginger

Have you heard of using serine to treat ALS due to the protein misfolding? What are your thoughts on that? sg.iherb.com/blog/l-serine-...

sunvox profile image
sunvox in reply toBlueginger

Wow! Thanks for that link. I take Taurine because of similar research, but I only take 2 g, and this study tested up to 15 g per day. That's a LOT of L-serine, but I definitely believe it is necessary to take some supplements in relatively high doses to have any impact. You have given me some homework for today :D Thanks again, Joe

kuchee profile image
kuchee in reply tosunvox

Hi Joe,

I am to try of thiamine B1 now. am confused in selecting of supplement brand to buy. Can you help?

I live in Pakistan and my aunt is traveling to USA. She will buy and send it by courier. thanks in advance.

sunvox profile image
sunvox in reply tokuchee

Hi Kuchee -

Yes, the Solgar brand is very well known worldwide:

amazon.com/Solgar-Vitamin-T...

kuchee profile image
kuchee in reply tosunvox

thanks Joe.

Stanleyclan profile image
Stanleyclan

Morning Joe 😁 Did you update your original post so the 'here's what i'm doing' is the most recent as I know there were several updates further down but they seem incorporated now? Its good to hear from you with your usual positive outlook. Thankfull as always for you sharing your research x

sunvox profile image
sunvox in reply toStanleyclan

Hi! Yes, my routine has several minor changes, but I can not stress enough that I am feeling absolutely symptom free now, and that was definitely NOT the case as recently as May. I upped my trehalose intake as well as my thiamine intake plus added CoQ10. I continue to believe it is the combination of ALL the items that is making a difference so I can't say which one I would consider more important than any other. Cheers, Joe :D

stjamesangel profile image
stjamesangel in reply tosunvox

Hi Sunvox, can you please put up a list of supplements you take and how much (dosage)

Angela

sunvox profile image
sunvox in reply tostjamesangel

Hi Angela -

The link below has a detailed list of all that I take and do with links to the science behind why I picked what I did. Also, I update that link whenever I make a change in my routine. I suggest folks who are interested check that link a couple times a year.

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My SCA1 progression has stopped. My alternative therapy for SCA1: healthunlocked.com/ataxia-u...

Collinhucn profile image
Collinhucn

Hi, Joe. I 'd like to thank you for your list of supplements. I take some of them, hope it works in future.

sunvox profile image
sunvox in reply toCollinhucn

Thank you. I do too. In fact I'm counting on it as I have 7 years to go before I can even think about retiring. :D

Happyfacexx profile image
Happyfacexx

Thanks joe, fantastic to hear you are symptom free still, after being diagnosed a few years ago , I hope it inspires anyone who thinks it has to be all down hill, because we can improve things a lot if we put the time and work in 😀

BeckyM80 profile image
BeckyM80

Very interesting. Where do you get your supplements from?

sunvox profile image
sunvox in reply toBeckyM80

I buy everything off of Amazon only because of the convenience.

sudoku123 profile image
sudoku123

Joe

Thank you for all you information. Happy for you.

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