I'm new to this site and just been diagnosed with early stage HD. I was trying to research as much as I could about HD treatments (or lack of) as I found out. There was a lot written about using EPA and Creatine to slow the progression of HD written between the years of 2000-2002, but very little since. I was wondering if anybody is still taking these supplements, and if so, are they still giving the great results that was once written about? I see there is articles written about what HD patients should be taking, but they again are from 2000 or 2001. There seems to be no updated information or progress noted with continued medical research? I'm also suffering with my recent diagnosis of HD and was wondering how some people can be so postive (Like Kelly B. for example) when the future is so bleak. It seems that the world has came crashing down on me now. I would apprecite any information that anyone could provide to help me!! Thank You

Welcome to HDAC, Bobby. I am sorry about your recent diagnosis. The reason that the research information isn't updated here (and you're right it should be) is because we are now responsible for another site which focuses heavily on the research: [www.hdlighthouse.org]

EPA is now in a Phase III clinical trial again - the first one just missed statistical significance. Creatine is also in clinical trials and is looking very, very promising.

Other things that people are doing is exercising to fitness (exercise raises BDNF which is reduced with HD) and eating antioxidant rich food such as blueberries (oxidative damage occurs both with aging and with neurodegenerative disorders).

There are a number of other clinical trials coming up and there's a big push to find biomarkers for the disease so that clinical trials can be shortened. There is real reason to hope.





Edited 1 time(s). Last edit at 01/04/2006 09:00PM by stevei.

Bobby,

I'm sorry to hear about your diagnosis. I'm sure this is a difficult time for you. You will be in my thpoughts and prayers. Many HD at risk and HD positive people take antidepressants. They help you feel betetr and they may help the brain. I've been on an antidepressant, for non-HD related issues, for years. I find it very helpful. I also take 2 grams of EPA daily. I have a GAG count of 37, which means that I may or may not become symptomatic.I am 61 years old. I am non-symptomatoc at this point. I also walk about three miles about four times a week. I've only been walking regularly for about a month.I feel better when I walk.

Bobby,

I tested positive in July, 2003. I did not know there was HD in my family (long story), so it was a rude shock. I decided to fight it as hard as I could and to make myself useful as a research subject or clinical trial participant. I'll be the first to volunteer for gene silencing therapy, a very promising potential treatment/cure. My CAG count is 40. I'm 59 with no symptoms.

I've run about 70 marathons and ultramarathons and my weekly running mileage averages 60 to 70 miles year round. I also take a bunch of neuroprotective supplements. Here's my daily lineup. The ones with an asterisk are HD specific.

*Creatine 10g
*Blueberry Concentrate - equivalent of a cup of berries - one tablespoon
*Pomegranate Concentrate - one tablespoon
*TwinLab MegaTwin Fish Oil capsules - 3 a day with meals - 1,800mg EPA
Multivitamin
Vit C - 1,000mg
*Vit E - 400 IU - needed to get the full benefit of the EPA
Glucosamine sulfate - for joint health - 1,000mg
*TwinLab Choline capsule - 350mg
*Ginkgo Phytosome - 80mg - supposed to be better than Ginkgo Biloba as a neuroprotector
*About 8 oz Soy Milk with a scoop of soy protein powder added
*1.2 oz Dark Chocolate - Lindt Swiss or Perugira Italian (from the grocery store)

I'm serious about the chocolate. The flavanoids are supposed to be neuroprotective. I have noticed an impact from the supplements. My brain feels sharper, I seem to be calmer and I feel like I'm driving better. The sensation is that my vision has improved, but that's not true.

Will
Raleigh, NC

Will Is there some reason you take blueberry concentrate instead of just a cup of fresh or frozen blueberries ? Of course I live in a provience that grows a ton of blueberries and they are easy to get .Yet is the concentrate better for you in this case ? thank you . db

DB - I get both concentrates from Brownwood Acres. Theirs is from wild blueberries, which I believe has more powerful anthocyanins than cultivated. I like the concentrates because they're easier. I mix a tablespoon of each with my daily dose of creatine and some water. Sometimes I add a dash of orange juice. The blueberry stuff is pretty tart.

Will

Will,
I am so glad that you wrote on this. You are certainly the most informative (with personal experience especially).

Bobby,

Sorry, I just read your post. Just to let you know my story.

I am 46 & tested positve in January 2005. I don't know my CAG. I've probably been symptomatic for probably at least 3-4 years now. I have to tell you my doctor did not tell me a thing about taking supplements, I heard about them from this site. I started EPA (fish oil) 2000g a day, I take Essential Greens 3000 (they are capsules) (which has the blueberry, green tea, & lots of other good stuff) on 6/11/05. I also try to stay positive about things. (I'm the one who figured I had HD like my dad & his siblings.) Thankgoodness I didn't deny it like my inlaws.

I have noticed a signifant improvement in every part of my HD. I haven't bashed into a wall, had trouble brushing my teeth, had trouble grabbing & holding on to things, and many, many other symptoms for many, many months.

Of course, now that its cold out, I do get a bit more symptomatic. Only when I get all shivery.

Hope this helps,

Carol