I am new to the forum and HD in general. Found out a week ago I am positive with a CAG of 41. I am 35 and do not have any symptoms, my father was diagnosed a month ago at 70, so I am trying to figure out what I can do to delay onset. I'm in Chicago and Rush hospital seems to be a pretty good center for Huntington's.

My neurologist recommended exercise, specifically activities that help with balance since that is affected with HD - yoga / tai chi. She was not too enthusiastic about the various supplements. She took more or a "it doesn't hurt" approach. I can understand her hesitation since there have not been any conclusive results from the studies.

Nevertheless I plan on following the recommended supplements of EPA, CoQ10, creatine, Trehalose, and Blueberry.

With the creatine supplement I found a pill form from NSI vitamins with the brand name of CreaPure. Each pill is 2250mg. Most of the recommendations of Creatine are in powder form. Any opinions on the pill form??

For the other supplements the plan is 1200mg of NSI Vitamins Tishcon Q-Gel CoQ10, 2000mg of Nordic Naturals Ultimate Omega. MegaFoods Wild Blueberry, and NeuroCoat Trehulose.

If any of the brands are not recommended let me know. Any other suggestions would be appreciates.

Thanks
Tom

where do you buy the creapur?

I found out the chewables I was using when I left home to run around (and suddenly got tired) are rotting my teeth... I need a quick form like capsules.

I found the powder dissolves best in milk at warm temperatures, so I mix up chocolate to take the powder form. Too high in calories for me, but will figure something out later.

Apple

NSI is the vitamin manufacturer. I purchase mine from www.vitacost.com. Here is a link to the actual product -
[www.vitacost.com]

I Tom, it's nice to meet you. I use creatine occasionally, when i do i use the powdered micronized kind, the micronized kind disolves completely in a glass of water, and is completely tasteless. It's good that you're trying to be pro-active. I don't do all the supplements myself, but some that i do are Vit C and zinc, and Vit E once in awhile too. These 3 are actually very good for the brain. It's nice to know your dad has such a late onset, hopefully it will work that way for you too.

Hi Tom,

I'm starting to use Creatine. I thought a person had to drink it with a sweet juice like apple or grape.

It is necessary to take Vit E.(It must not be for memory, I can't remember why I take it.)LOL

Beth

Welcome, I also take the capsules rather than the powder. I get them at Walmart. I'm better at taking a capsule or two than mixing powder. I think most people will say they use the powder because it is less expensive, but the capsules don't seem that much to me, about 10.00 a month.

Tom,

I took a look at the creatine caps. The serving size is 3 caps and there's 2,250mg in each serving. If my math is right, it would take 13 caps to get the recommended 10 grams. I use TwinLab micronized. There was an early human study with creatine that showed no effect at a 5 gram level, but a leveling of symptoms at 10.

You have to do the same math with fish oil caps to make sure you're getting 2,000mg of EPA. To get the full benefit of the EPA you should also be taking 400iu of natural Vitamin E. The synthetic doesn't cross the blood/brain barrier.

I'm positive, CAG 40, with no symptoms at age 60. I wrote a piece for the Lighthouse a while back about what I'm doing to stay that way.
[www.hdlighthouse.org]

Will

Thanks for the info Will. I forgot to look at the servings number for the Creatine.

I notice in your article you do not take any CoQ10. What are your thoughts on that.

Thanks
Tom

Tom - Jerry Lampson, the late founder of the Lighthouse, was down on Q10. Early results of trials were uncertain. Some other folks who are a lot smarter than I think the large trial that's getting underway is barking up the wrong HD tree. Jerry wasn't right about everything, bless his heart, so if the trial shows benefits I'll add it.

It's also pretty expensive, and I can't take everything that might help. I spend more time taking supplements in the morning than most people take to eat breakfast. I did add Trehalose since that article was written - two tsp/day.

WB

Some unpublished mouse research suggests that there is no additive effect to the CoQ10 over creatine -- it's likely to be an either/or situation since they address the same HD pathology - lowered cell metabolism. Since creatine is cheaper, most people are choosing to go with creatine. If the CoQ10 study is finished before the creatine study and the results are good and CoQ10 becomes an approved drug for HD, then people who have prescription coverage may wind up choosing the CoQ10.

Also, CHDI is funding research into developing an analog of CoQ10 which will be more bioavailable and have fewer side effects. That sounds promising.



Edited 1 time(s). Last edit at 05/01/2007 02:34PM by Marsha.

Welcome ChiTom. You have come to a great place
-Trish

It seems that creatine is favored over CoQ10. I guess for now I'll return the CoQ10 and stick with the 10g of creatine. There seems to be more HD related research with creatine vs. CoQ10.

I had thought CoQ10 was out? Seems like you had a study that said it didn't help. If that was so, and it is like creatine, what does that mean? Or maybe I'm mixing it up with some other supplement that we all stopped taking? I hope you respond..Marsha??

CoQ10 has continued to be promising in early clinical trials. It needs a Phase III clinical trial (as does creatine). Both creatine and CoQ10 boost cellular energy so most likely you only need to take one.

Other supplements do different things. Trehalose helps with protein folding and clearing away the HD protein, for example. That's why the Lighthouse is arguing for combination clinical trials -- because we may not see statistically significant improvements without addressing all of the major pathologies of the disease.

It was ethyl-EPA (Miraxion) which failed in the last two Phase III trials. I'm not convinced that EPA is useless but I do think that it may not be that helpful in isolation.

Here's the thing about the mouse studies. The treatments are given early - often before the mice have symptoms. Think about HD and all the things that it eventually causes to go wrong in the neuron. Literally dozens of things! And yet the cell has many defense mechanisms that work for quite a long time, decades for most adult onset HD, before the cell becomes dysfunctional. I suspect it's sort of like the straw that broke the camels back. Taking a supplement early may keep a straw off the camel for a longer time. However, when someone who is already symptomatic is being treated, the likelihood is that you have to focus on more pathologies with an HD cocktail of treatments.

If there's a compound which promises to make a major difference - like a caspase 6 inhibitor (when one becomes available) then it makes sense to test it in isolation.

But I think we need combination trials of the supplements which have smaller effects in and of themselves.

Have there been any studies done that show the affect an HD cocktail has on delaying onset. I've heard from individuals with similar CAG as myself and that have been on the HD cocktail (and exercise) be symtpom free for a long time, into their 50s+. I'm trying to figure out if that is the more common case or if it is the exception.

I would imagine that treating a non-symptomatic individual with an HD cocktail in order to delay onset and treating somebody with symptoms would generate different results for the supplements. Taken early enough they might do well in helping delay onset but when the symptoms start their effect might be greatly reduced.

One of the reasons I decided to get tested was because I did not want to sit around waiting for HD to start. Similar to Will if I was positive I was determined to give myself a fighting chance and do everything possible. So if these questions have been answered in old posts or it sounds like I'm going around in circles I want to apologize and thank everybody for their time.

The Huntington's Disease Drug Works group has tested supplements in combination and compared the results to the placebo group in previous studies. The limitation is they don't know which supplements are working and which don't because people take all of them. These are called therapeutic trials rather than clinical trials.

What they found is that early stage Phds improve, mid stage Phds either improve or have slowed progression but most later stage Phds don't benefit.

What about memantine? I know we have had this discussion before. Memantine is getting good results with people who are already symptomatic - and just as with the cocktail for HD maybe mematine could be added as another preventative? If it helps so much like the other stuff does then what is there to say that it would help even more before the symptoms start?

This is an argument I am going to be bringing to my doctor next time I seem him.

Stacy-NJ

You might also consider NOT consuming things that do the opposite of what the supplements purport to do. Acetaminophen (Tylenol,etc.) in particular comes to mind as well as fava beans and iron and copper supplements. Many of the substances on your list participate in maintaining high levels of cellular anti-oxidants. They are involved in metabolic chains that ultimately un-oxidise (reduce) glutathione. Reduced glutathione is the actual substance that protects the cell from detrimental oxidative processes. Acetaminophen binds with glutathione and removes it from the body as it is itself removed. Acetaminophen poisoning is thought to happen in this way (http://www.benbest.com/nutrceut/NAC.html). The symptoms of the poisoning even resemble HD. Whatever the arguments, it ?does no harm? to avoid acetaminophen and fava beans, etc.

remig, are you able to explain this a little more? Are you saying we want more glutathione, or less? Memantine that i take is an anti-glutamate. Thanks.....smile



Edited 1 time(s). Last edit at 05/06/2007 02:24PM by Barb.

Let me remind myself, here.

When we're talking about "improvement" and "symptoms", in regards to these supplements - we're talking about physical symptoms, right?