I chose my supplements based on research and cost. I couldn’t afford to take everything I would like to, so I chose those with the best potential at affordable amounts. That’s why I chose Creatine alone instead of a combination of it and Coenzyme Q10. There is not a lot of hard research on neuroprotection, so I also chose under the philosophy “Can’t Hurt, Might Help”.
There are any number of drugs, supplements and potential therapies available to treat HD. A comprehensive list can be found at the Stanford HOPES site at http://tinyurl.com/cjxbo2p That site also has detailed information for each item, including the status of research and clinical trials.
Creatine is currently in a Phase 3 clinical trial, CREST-E, using very high doses of up to 40 grams per day. This is a large study lasting 37 months and due for completion in December, 2014. Creatine does have one side effect for most people – loose stools. I am currently taking 10 grams a day in the morning. That level keeps the problem to a manageable level for me. At 20 grams per day (10 in the morning and 10 in the evening) I was experiencing multiple episodes, so I went back to 10. I’m a fairly small guy, so 10 per day for me is equal to a higher dose for a larger person. I tried all sorts of dietary interventions to help this without success. The good news is that loose stools are only an inconvenience and you won’t be troubled with constipation.
If you take creatine, you should make sure it is pure creatine monohydrate. Some formulations include other stuff. Creatine is made in the body, but all supplements are manufactured synthetically. If you buy from a reputable source, you will be getting a good product. Micronized creatine is a little more expensive, but it is finer and dissolves better in liquid. Some folks say it tastes bad, but I think that’s just the sensation of grittiness. I mix mine in just a little bit of water and chug it down.
A clinical trial of highly purified fish oil for HD was not successful (Miraxion). Fish oil contains the omega-3 fatty acids EPA and DHA, which may be beneficial for HD. Miraxion contained just highly purified EPA. Early mice studies showed a benefit as did one human trial using a combination of EPA, DHA and GLA (found in flax oil). Fish oil is good for all sorts of other things besides HD.
I take a daily dose that gives me 1,650 mg of EPA and a 645 mg of DHA. Earlier wisdom said that 2,000 mg of EPA was the most important, but later thoughts are that DHA should be higher. The jury is still out on that, so I’ll stick with my current dose.
Fish oil may produce oxidation, so I also take Vitamins C and E, which are known anti-oxidants. There’s not much research on that, but Vitamin C at 1,000 mg per day and Vitamin E at 400 IU per day are safe. When choosing a Vitamin E brand, be sure to get the natural type rather than synthetic. It will cross the blood/brain barrier better. The natural label will read d-Alpha Tocopheryl (or something similar) and not dl-Alpha. The dl prefix always indicates synthetic.
All blueberries contain anti-oxidants and a substance called anthocyanins. The wild version of the berry contains more of everything than cultivated ones. They also have specific types of anthocyanins that cross the blood/brain barrier and may grow new brain cells in humans. This process is called neurogenesis. For many years it was thought that new brain cell growth was impossible – what you were born with was what you would die with.
I thought I had read about a study where HD mice fed the equivalent of a human cup of blueberries a day did not develop symptoms. In researching this article, I couldn’t find it. Either it was a small unpublished study or my hopeful imagination. However, in two separate experiments in 2002 and 2003, laboratory rats fed the equivalent of a cup of blueberries a day performed much better than controls in maze tests, apparently from neurogenesis.
In a 2010 human study (Krikorian et al.),one group of volunteers in their 70s with early memory decline drank (the equivalent of 2-2 l/2 cups of a commercially available blueberry juice every day for two months. A control group drank a beverage without blueberry juice. The blueberry juice group showed significant improvement on learning and memory tests.
Wild Blueberry concentrate and capsules are available from www.Brownwoodacres.com
They are a reliable supplier of quality product. I take two capsules a day, the equivalent of a cup of berries.
Trehalose is a disaccharide (two sugar) molecule composed of two smaller glucose molecules linked together. It is naturally produced by the body and can also be found in common foods. The U.S. Food and Drug Administration lists trehalose as a compound under the category of “generally regarded as safe.” Since trehalose is a sugar, it is used as a sweetener in products such as chewing gum.
It also has a very important property that helps it to stabilize proteins and can thus be used as a biological preservative. It is this very feature that may useful for treating Huntington’s disease. Scientists think that if these proteins can be stabilized before they are fully folded, the protein aggregations will not form. One research group set out to test just that idea. They found that disaccharides are good at stabilizing molecules with extra CAG repeats, and are therefore capable of preventing protein aggregation. Trehalose was the most effective stabilizer of all the disaccharides tested. The researchers think that trehalose works by binding directly to the glutamine repeat section (the extra part of the protein that usually makes it unstable), while leaving the normal proteins unaffected.
Trehalose is found in nature, but it would be impossible to produce economically. A Japanese company recently found a way to extract it from starch. It is available from a number of sources. I use the Swanson’s brand which is available from Amazon.com.
Dr. LaVonne Goodman’s HD Drugworks site recommends the following dosage:
25 grams (6 tsp or 2 tbsp) three times per day. Each dose is about 90 calories, so it should be used as a sugar substitute. Trehalose is only 50% as sweet as table sugar, and does not increase blood sugar or levels nearly as much as the same dose of regular sugar. Side effects may include bloating and diarrhea. Decreasing dosage will prevent these discomforts. This is a safe agent even at very high dosage.
I take a minimal dose of 15 grams once a day in my morning coffee. A helpful hint for measuring any powder like trehalose or creatine: a heaping teaspoon equals 5 grams.
Thanks to the HD Drugworks and Stanford HOPES sites for technical information on these supplements. Remember that I am not a Doctor. You should clear any supplement you’re considering taking with yours.