Hi. I have a question about Neotine. First, is there anybody out there that uses it? I'm confused about this product. Is Neotine the same product that will be used in the Phase III HD-02 trial with Avicena? I've been waiting for that trial to start, but I just heard it won't be until 2008. In the mean time I guess I could go ahead and buy Neotine. I just wondered if it's the same product that will be used in the Clinical Trial.

Thank you to anyone who can provide input.

Yes, it is the same product.

JLS,

I've been using it for about 6 months - 10g in the morning and 10g in the evening. It's advertised as "medical grade" creatine, but I don't think it's the same as HD-02.

Will

I won't argue with Marsha. :-)

Will

So how have you been feeling since you have been on that product , Will ? db

db,

I've been on creatine at 10g a day since I tested positive 4 or 5 years ago. I switched to Neotine from TwinLab about 6 months ago and increased the dose to 20g daily, split between morning and night. That was based on the Phase 2 study of HD-02.

I've not had any side effects. Since I'm asymptomatic I can't tell if it's having an effect. Something is. Neotine is highly micronized and dissolves well. I have noticed that I don't seem as thirsty with it compared to other creatine.

It is pretty expensive at the 20g level. I wrote Avicena an e-mail suggesting volume discounts but didn't hear back from them.

Will

I haven't seen any changes in your ability to write or your sense of humor or even- tempered responses to controversial posts in all the years you've posting, Will. You've got a lower CAG repeat, you've been running for years and taking supplements and maybe what's happening here is you've managed to keep all the cell's defense mechanisms against the HD protein working at top efficiency and it's enough. If you don't mind being used as an example for a minute <g>, it makes me feel like you are 'proof of principle' that HD can be conquered. Obviously, all the proactive things that HDL folks are doing aren't going to work indefinitely. But I think people may very well be buying time until treatments which do the same things as exercise and supplements only with more efficiency and better bioavailable are ready.



Edited 1 time(s). Last edit at 11/02/2007 01:40PM by Marsha.

Will did you feel a difference from the dosage increase . Did you feel better or the same , and it was just for insurance . db

db - It was just for insurance. I feel the same. I did notice a difference about 6 months after starting my supplements after testing. All of a sudden I noticed that my brain seemed sharper. Things like tailgating drivers didn't bother me as much and I felt calmer about everything. The most notable difference is that my driving seemed better. It was almost as if my vision had improved. I felt more comfortable driving right next to Jersey barriers on my daily commute.

Marsha - I'm always willing to be an example, good or bad. :-) I think you're correct - I've stumbled on a combination that keeps everything in balance. Running is a big part of it. Making enough BDNF to offset what's being depleted by the HD gene helps, but it's probably not the whole thing. The improvement I've felt from the supplements could be a reversal of early soft HD, or just better brain health.

MY CAG is 40, for any newer readers.

Will, by coincidence, just finishing his daily dark Dove bar. A tough supplement to have to take, but I can handle it. :-)

Will,

I am curious, what is your typical run or exercise program consist of ? How can one tell if by exercising they are increasing enough BDNF's to offset what is lost ?

I know that diet, exercise and supplements have a great deal with the delicate balance for living positive but how would I know I am doing enough to offset things ?

Do you think its worth switching to Neotine, from creatine ?

thanks in advance,
>>LP

Thank you so much everyone for your input and response to my questions about Neotine. I really appreciate your help.

This message board is a life saver!!

Thank You!

LP,

I run 6 days a week year round. My weekly mileage when training for a race is between 60 and 70 miles. Around 40 when not in training. There's no way to tell how much exercise you need. Mine is excessive because I'm doing it for reasons beyond HD.

My gut feel is that a brisk walk 3 times a week is not enough. There is a thing called the "Runner's High" which is related to the release of endorphins (happy chemicals) in the brain. That's not the same thing as BDNF, but it may be related. Runners who have a sustained program report getting it occasionally. Beginning runners with a minimal program don't. I experience it once or twice a week.

To continue my gut feel with no scientific evidence, I think the BDNF breakeven point will come from running, not walking, an average of 3 miles a day, 5 to 6 days a week. Now, you don't have to start with that amount, and your running speed doesn't have to be much more than walking grandmothers.

I think it was worth the extra cost to switch to Neotine. I would hate to develop symptoms and then look back and wonder if Neotine would have made the difference. Another insurance policy.

Will

You can track BDNF on HDL . It will give you alot to read and think about . db

Will not disputing your gut feeling, but since most people won't go to even to the extreme of running 3 miles I fall back on what they have found with Alzheimer's. Very modest helps prevent dementia in those folks. Even the very elderly or less fit. In fact this study said those less fit but doing exercise anyway benefited the most. Maybe it takes more mental concentration to exercise if it difficult...who knows. But anyway it looks like one should not think just to heavy exercise as the key if you know you will never do that much...like I won't...lol. But I can walk for 15 mins a day 3 times a week. And just that much is helping to delay Alzheimer's. Here is a link to what they found in that case. I really think one should do even modest amounts of exercise unless we here differently. If you can do what Will says... I think that would be great!

[www.webmd.com]

I would love to be able to exercise more but never have much time. Today as i painted my daughters room two coats of paint, two colours with a two inch brush -does that count? Honestly as i was painting, i opted for brush rather than messy roller, i thought this has got to count, my arm is nearly falling off! I have also been walking my school runs, i only passed driving test in APRIL. But have already decide to walk as much as i can and try to do a exercise dvd at least once a week. I did go to a Kung fu lesson, which i loved. But i couldn't move for two days lol.
Any ideas to incorporate more??

i love to lay on the bed and watch the workout channel on tv. that also should count for something....at least its not the food channel.

I have been taking Creatine sence I tested positive 4 months ago. What is the differance with Neotine and Creatine? I'm just wondering if I should switch.

Violet

Neotine is the brand name of the creatine they use in the trial. It is being tested as medicinal and is supposed to be exactly what they say it is. Other brands of creatine may be just as good but supplements have been notorious for having less strict regulations and may have discrepancies in the active ingredient from package to package. My guess is that a reputable supplement company will have good creatine.

When i was deciding what creatine to take i looked at the site
[hddrugworks.org]


Creatine Fact Page | Print | Email
Creatine is a supplement that can be bought over the counter at health stores and pharmacies, or can be ordered "on line". Make sure that the one you choose is Consumer Lab approved.

Mechanism of Action: Creatine is an energy chemical that can correct the low energy state that is caused by Huntington's.

Rationale for Use in Huntington's: In several research studies, creatine has decreased brain damage and improved energy function in the brains of HD model mice [Ferrante 2000] and HD people [Hersch 2006]. In human study, creatine prevented disease progression in HD people for both one and two years [Tabrizi 2003, Tabrizi 2005]. In other studies, creatine has been shown to reduce biomarkers of oxidative injury in brain [Hersch 2006]. Though not published yet, Dr. Diana Rosas reported that high dose creatine can decrease brain loss in one region of the brain by 50% over a two year period (see report on HD Lighthouse). Also not published, but presented at a Neuroscience Biomarker meeting, the 20 grams per day dosage has been shown to decrease the oxidative biomarker 8OH2dG to normal levels (see page 31 of the presentation at Institute Of Medicine Forum by Dr. Steven Hersch). Thirty grams per day was also studied. It is my opinion that that 20 grams per day (10 twice daily) is best dosage. The small increment in benefit provided by the 30 grams per day is not worth the risk of greater side effects.

Dosage: My opinion is that it should be at least 10 grams/day, taken in 5 gram doses twice daily. There is evidence that 5 grams per day is ineffective. My recommendation for "best" dosages is 20 grams per day (10 grams twice daily). You must be supervised by a doctor. It is essential that you are in good health, without other medical problems such as diabetes and kidney disease. You must avoid dehydration and have regular kidney and liver blood testing.

Whatever the dose, make sure that the creatine product is Consumer Lab approved. Consumer Lab checks for a toxic chemical (dicyandiamide) that is present in some preparations. This is particularly important when using high dosages. The powder monohydrate form of creatine is best value. Creatine should be stored dry, in a covered container at room temperature. Powders should be taken shortly after mixing with liquid because activity can be lost if kept in liquid form.

Side Effects: Creatine can cause diarrhea, severe muscle cramping or pain, and vomiting. Creatine is a "salt" and at high dosages will cause thirst. Drink plenty of fluids and avoid dehydration. Always divide the dose and take it two times a day.

Sources: Avicena NEOtine is a "medical grade" product is used in clinical trials. Cost for 10 grams per day is $46 per month. NEOtine can be obtained from Avicena's online store.

The sources listed below supply products that are CL (Consumer Lab) approved. Costs vary per manufacturer and distributor, but can be as low as $6-$7 per month for the 10 gram per day dose.

Met-Rx Hardcore creatine powder
GNC Pro Performance creatine powder
GNC Pro Performance capsules
EAS Phasphagen creatine powder
Body Fortress Hardcore Formula Creatine Powder Drink Mix (U.S. Nutrition)
Creatine Monohydrate powder (Universal Nutrition)
Precision Engineered Hardcore Formula Creatine Powder (U.S. Nutrition)


It does tell you other good creatines, if you are like me in the UK where postage was too high for the neotine (i too would have liked the 'insurance'). I am using the met rx hardore creatine powder. I can't give you a comparison though as i have only ever taken that one!

I have to say that whenever i take it i think i need to work out.... My body really wants to, luckily my mind jumps in and stops it.

Rowan, I have to say you are to healthy watching all that exercise! I LOVE the food channels...