Hello All!
So my boyfriend and I are very new to this...we have just recently decided to acknowledge that he is indeed at risk and that we need to be more proactive. We're trying to come up with a good vitamin and exercise regimen for him, and I would like a little advice on this from some more knowledgeable friends in the HD circle!

These are the vitamins we're thinking of:

coQ10
Fish Oil
Blueberry supplement?
Vitamin B

My questions are 1) does this sound like a good combo for someone at risk? 2) what dosage of each would you recommend?

I know a lot of people would say talk to your physician, but unfortunately both of us are uninsured and in a rut financially. We both just want to feel like we are doing SOMETHING, and I really think a healthier lifestyle would be a good first step.

THANK YOU ALL

I`m not an expert.
I think you can`t go wrong with these. I ve read some people with HD dont take any supplements, others do, or even more complex daily basis.But it`s also a question of money.

Also have a look at grape seed extract, they are avaliable in a lot health stores. and there were recently some encouraging research about it.
My supplemnts are, 2g Vitamin C, Flaxseedoil, Vitamin B Complex, Zinc. But I dont have HD, I`m at risk, I have another disease.

There are also supplements, which maybe help some symptoms. 5 HTP maybe help for depression, because it can ease depression, L-Glutamin maybe help anexiety and sleep.

I think it`s always a good idea, to do not overdo supplements. Just try things out, and then stick to supplemnts that help you.



Edited 1 time(s). Last edit at 05/17/2011 06:54PM by sarmiento.

Thanks so much for your advice I will look into the grape seed =]

ally-

i take:

- an organic very full multi with DHA
- creatine
- CoQ10
- a probiotic (not really for HD)

if you get fish oil, make sure you get the kind that has a citrus flavor, the really fishy ones are ick! i was planning to look into flax vs fish at some point when i get a sec. also the blueberry extract.

Grape Seed extract

[www.hdlf.org]


Also, very important, avoid milk products. Milk can trigger HD and also a lot of other diseases. Also wheat is bad.
I rember my dad was a smoker, and drank milk everyday and had horrible HD.

There was recently research about it.



Edited 1 time(s). Last edit at 05/17/2011 07:19PM by sarmiento.

Hi there and welcome. I think the list you have is a great list to start with. There are also some don't, along with do's. Stay away from supplements with iron, calcium, and copper, as these can make hd worse. I'm in the early stages, and the only supplements i take are vit d and vit c, i think they are two important nutrients that most people don't get enough of, and i think vit c is helpful to hd too. I would start with one supplement at a time, so in case something doesnt agree, you dont have to figure out which one it is, good luck with your list

Can someone please explain how/why milk triggers HD?

I drink half a pint daily for calcium and protein, and I obviously will stop immediately if it is going to make HD symptoms worse.

There are mixed messages on calcium, other minerals & dairy (dairy has other components besides calcium). I don't avoid calcium (cheese), but I don't make extra efforts to get more either. Soy products are better than cow-products. And in general, fewer animal products may be better for HD too.

Will has the best supplement regimen, and I've copied off of him, but added Ubiquinol (a more absorbable CoQ10) since I'm younger and therefore think I can still absorb some of it (even the "more absorbable" form is hard to absorb). I'll find his article if he doesn't post soon....

This is what I (try to) do:

Pills 2x/day (w/ meals): (5) 1000mg capsules of fish oil (with 400mg EPA & 200mg DHA per capsule - hard to find this listed let alone values this high, here's my source [www.vitacost.com] )
(1) 100mg capsule of Ubiquinol
Pills 1x/day (with above): 1 each of Vitamin E (400iu), D (1000iu), and B-complex including over 100%rdv of B6 & B12.
WHY: Vitamin E helps absorbtion of Fish Oil & CoQ10, but too much is not good. I think the Fish Oil also helps absorption of the CoQ10. Food helps absorption of all these. EPA is more important than DHA for HD, but some of both is good. Pills are also nice & portable which is good since I'm often out at these meals.

Other 2x/day (morning & night): 2t each creatine & trehalose in 1inch of water.
Other 1x/day (with above): 1T blueberry extract (skip this if it's blueberry season and I have fresh around).
WHY: Creatine is absorbed best with a carb, so trehalose provides that. For me, they also had opposite digestive affects so taking them together balances that. For others, BOTH are diuretics so they take nuts or something else to compensate. It's important to drink more water before/after, staying hydrated protects your kidneys from the creatine which is tough on them. Putting in IN just 1 swig of water gets the gritty creatine down/over quick, even though "micronized" creatine is finer particles it's still gritty to me. The sugar in the water also helps me mentally get over the gritty-ness (like it's just un-dissolved sugar). I do these morning & night b/c I'm home then, and I prefer not to carry them.

I know this looks like a lot, but once you get used it, it's not that bad. I have 4x/day that I think about this stuff, but it could be done in just 2x. Also, he may want to start slow in case there are digestive or other affects. My mouth was dry for the first few weeks but that eased up as my body got used to this stuff. Digestive issues did not ease up until I eased up on trehalose. At first I was putting it in tea and not measuring but drinking quite a bit, not good.



Edited 4 time(s). Last edit at 05/18/2011 01:50PM by smiling sara.

Yes, i dont avoid milk either, i just avoid calcium supplements, thats all

I remember reading years ago that the milk warnings were based on an outdated study that never repeated the results

JSR is correct. It was a study that the original owner of the Lighthouse covered and it was based on an exploratory analysis. As we know, age of onset is correlated with CAG count and is also influenced by other genetic factors as well as environmental factors. This study was done before the gene was discovered and it involved analyzing questionnaires from families about past health habits. As it happened, milk drinking was associated with an earlier age of onset. Was it a real or a random association? We don't know because there was no subsequent study to investigate it. And the problem with the study is that lots of potential factors were analyzed. The more stuff you throw into the study, the greater the likelihood that you will get a chance association. The gold standard for statistical significance is .05, meaning that a result is considered statistically significant if there is only a one in 20 likelihood that the result is due to random chance. So if you do an exploratory study and look at 20 variables, you'll likely get at least one association that isn't real.

Here's my current regimen. My general phillosophy in choosing these was: "Can't hurt, might help." There's also a cost element involved. I can't afford everything. That's one reason I left out CoQ10.

Will

Huntington’s Disease Specific

• Creatine 20g – 10g morning, 10g evening
• Wild Blueberry Concentrate - equivalent of a cup of berries - morning
• Pomegranate Concentrate – equivalent of one fruit – morning
• Fish Oil capsules - 3 a day with meals - 1,800mg EPA total
• Vit E - 400 IU - morning
• Choline - 350mg - morning
• Trehalose – 10g morning

General Purpose

• Multivitamin – morning
• Vit C - 1,000mg - morning
• Glucosamine sulfate - 1,000mg – morning
• Calcium 650mg – morning (2 extra strength TUMS Smoothies)
• Magnesium 250mg - morning
• 81mg aspirin – morning
• One Mini-Mounds bar – morning to lessen effects of high dosages of creatine (loose stools).
• One Phillips Colon Health capsule – morning to help with loose stools

Medications

• Testosterone Replacement Therapy – 7.5mg AndroGel daily – Not HD related. Started 2009.


PS: The greatest invention of the technology age was Copy and Paste.

Will, copy and paste LOL

Just to to continue the "we really don't know" theme, didn't I read on this board a few months back that Vitamin E might be something pHD peeps should avoid?

Thank you all for your amazing advice, so glad I found this forum! "rah rah rah"

I've always been a big milk drinker. I'm doing well, despite it! Mmm, milk, ice cream, yogurt, cottage cheese, good.

Will, why do you take choline supp?

Ive not heard of that being necessary although having looked up the food groups it occurs in naturally i may well be short of it...

Lorraine

Lorraine,

Choline acts as sort of a lubricant for transmissions between brain cells (neurotransmission). I picked it up from a long time poster - BobNeTex. He and I have the same CAG count (40) and are relatively symptom free in our 60's. There's no research that supports taking this for HD - it falls into the Can't Hurt, Might Help category. It's also quite cheap compared to other stuff.

Will

One more point on calcium: you don't want brittle bones with HD either, as people with HD may be more likely than others to take a fall now and then.

That's why it's a catch22 for me, don't avoid it but I don't supplement either.

My doctor understands that i shouldn't take calcium, and so she advised me to take 1000 mg of vit d a day, she said that is the recommended dose for all people now, and that it also helps strengthen the bones, and so because im post menopausal, and possibility of osteoporosis, and falls from hd, she thought vit d was good solution.



Edited 1 time(s). Last edit at 05/24/2011 03:24AM by Barb.