Okay, I've been doing alot of reading to say the least...

Having been recently (Friday) diagnosed as HD gene positive with a CAG of 41 and celebrating my 50th BIrthday on Monday, I want to get ahead of my symptoms. I don't have any symptoms yet...I don't think, and so I'm trying to get on a good exercise and vitamin, etc program.

How on earth do you know what type of dose you should be on with things like creatine, choline, vitamins...where do you get pomegranite and blueberry supplements?

My family doc isn't aware that I have this, for insurance purposes. So who is the point of contact to put together an appropriate regimen?

Thanks!!!!
Eating a cup of blueberries as I write this...Step 1.

Sara

The best person to ask about this is Will.

Hey Sara,

I'm 33, recently tested positive, and started supplements myself. I forget, was your testing anonymous, then??? Mine was, so I'm doing this completely without docs too. Though I'm considering having a doc in my family check my kindeys soon....

Here are some websites that list which ones and why.
You can get most of this stuff at Vitamin Shoppe, Vitacost, or Pilgrims Pride (where I got mine, great quantity discounts) all dot com I think; trehalose at [www.neurocoat.com]; and blueberry extract at brownwoodacres. Even in the US, where most of these ARE available in-store, I've found them cheaper online (or wholesale clubs like BJ's have the fish oil, you can get vitE anywhere).

VARIOUS TREATMENTS/SUPPLEMENTS:
Treatment Pipeline including explanations (HDSA ? Marsha Miller):
[www.hdsa.org]
Cocktail of Supplements ? results after 3 years (2007):
[hddrugworks.org]
Supplements & Links to Reasons (2004 Lighthouse, since then double creatine):
[www.hdlighthouse.org]
Anti-Depressant Fact Page:
[hddrugworks.org]
?Running from the Devil? by Will Brown (he?s doubled creatine + added trehalose since)
[www.hdlighthouse.org]



MY ADDITONAL NOTES:
For Fish Oil, you may want to to find one that has lots of EPA type since this has shown the most promise recently (2g of EPA).
For Creatine, people have recommended "Micronized" since it is a little less gritty/stays suspended better in liquids; I'm going to do this next time.
And for CoQ10, I went for Ubiquinol type (rather than "Ubiquinone" since it claims to be 6-8x more absorbable, I did not mind paying 2x as much. Other people consider CoQ10 the one that you might get the least bang for your buck/less solid evidence, so they don't do it.

I made a spreadsheet that listed the # of pills/teaspoons, mg/g in each, total mg/day I wanted to take, cost, and cost per day, of each of these; I can email it to you if you pm me with your address. For 200mg Ubiquinol CoQ10, 20g/day of creatine powder, 3600mg of BJ's fish oil, 1T blue extract (when fresh berries aren't cheap/in season), and 30g/day of trehalose, plus 400ui of vitamin E for absorption, it comes out to about $1.60/day, or just under $50/month.



Edited 4 time(s). Last edit at 08/26/2010 07:11AM by smiling sara.

Hi Sara
I found this site here on this forum:
[www.brownwoodacres.com]
we get the blueberry there because I know that my husband won't eat 1cup/day. he takes 2 gelcaps/day.

Also - he was tested at a clinic and the only support we got in terms of what we should start doing was "eat lots of fruits and vegetables and take a multi-vitamin". We are doing this all on our own and I think most people who are taking supplements are doing it on their own.

I just say that because I think that this forum is the best place to figure out your regimen - I don't think many (if any) people go into their diagnosing doc and hear "OK, lets get you set up with supplements..."

As far as I can tell everyone is on their own in this regard.

Good luck to you
BTW - my husband is taking @ 15g Creatine, equivalent of 1 cup blueberrues, 400ui E, Fish Oil (I thought that DHA was the important component), multivitamin

Sara,

smilin' sara has taken my place as the most knowledgeable person on supplements and sources. Brownwoodacres.com also has pomegranate concentrate in capsule form as well as blueberry. I used to use the liquid concentrate but switched to caps.

The brand of fish oil I use, TwinLab MegaTwin, has the most powerful ingredients I could find. 3 of those caps give you 1,800 mg of EPA a day. I get those at vitaminshoppe.com

Will

Thank you Will, but no. I've only been at this a few months, and you are my best go-to source! You are a walking successful experiment, and have sensibly evaluated the latest research for years!

Sara,
I will send you my email address. I just thought, a big strappin' dude like will may need a little more dose than me.

I get a little nervous of over doing the vitamins as I've heard that can do damage too. Sounds like you two have tested the course..so I will follow. Not sure I look forward to the side effects of creatine (yipes)...but we'll see!
Thanks you all....this is new..and I'm just eating fresh blueberries by the cupfull right now...until I can get the rest of this down.
Sara

I'm 5'9", 130 lbs on a heavy day. Hardly strappin'. None of the vitamin doses in my regimen would be considered overdoses. I've also got a 5 plus year history with no ill effects. My regular doc, actually a PA, takes a careful look at my bloodwork once a year to make sure there's nothing wrong.

Will