Huntington Disease Lighthouse Families

For HD families ... by HD families


Posted by sarmiento 
March 06, 2017 09:44AM
Hello all.

my english is poor

1. Is Trehalose a good idea to put it on my supplemtens list ?
2. Has anyone experience by taking Trehalose over years any noticed positiv changes or improvements?

3. Is safe to take a high dosage over years ,e ? 25g three times daily.
Like mentioned here

thank you smiling smiley

Edited 5 time(s). Last edit at 03/06/2017 10:12AM by sarmiento.
Re: Trehalose
March 06, 2017 05:10PM

Your English is fine. I'm gene positive, CAG 40 with no symptoms at age 70. I took Trehalose for about 10 years, but in a much smaller dose - maybe 5 grams once a day. Something worked, but I think it was my exercise (running) and other supplements. I have added Prevagen about a year ago and dropped Trehalose entirely recently.

Even a very small amount caused gastrointestinal problems for me. My bowels have thanked me! Here's what I take now.

Huntington’s Disease Specific

• CON-CRET Creatine HCL one capsule daily 750mg (
• Wild Blueberry Concentrate - equivalent of a cup of berries – morning ( 2 capsules
• Pomegranate Concentrate – 2 capsules - equivalent of one fruit – morning (
• Fish Oil capsules - 3 a day with meals - 1,800mg EPA total (Dr Tobias Optimum Triple Strength Fish Oil from
• Vit E - 400 IU – morning ( – all natural type)
• Prevagen 10 mg Apoaequorin from Morning Started June 2015

General Purpose
• Multivitamin – morning (Drugstore)
• Vit C - 1,000mg – morning (Drugstore)
• Glucosamine sulfate - 1,000mg – morning (Drugstore)
• Calcium 650mg – morning (2 extra strength TUMS Smoothies) (Drugstore)
• Magnesium 250mg – morning (Drugstore)

• Testosterone Replacement Therapy – 60.75mg testosterone (AndroGel) daily – Not HD related. Started 2009.
• Low dose 81 mg aspirin – daily after surgery for peripheral artery disease December, 2015
• Atorvastatin (Lipitor) 10mg daily after surgery for peripheral artery disease December, 2015

Re: Trehalose
March 23, 2017 06:20PM

Did your doctor give you this list of supplements. Just wondering how you arrived at this list

Re: Trehalose
March 26, 2017 04:13PM

Just the medications. My HD doc has seen the supplements and doesn't see anything wrong with taking them. I chose based on some science and intuition by HD people - Dr. Lavonne in particular.

Mine fall into the category "Can't hurt, might help." There's also a cost factor, since I can't afford everything. I think they cost around $1,200 per year.

Re: Trehalose
March 28, 2017 08:26AM
I have a chiropractor that is helping me with diet and supplements. She wants me to follow Dr Terry Wahls book and program have you heard of her?
Re: Trehalose
March 29, 2017 08:31AM

Re: Trehalose
April 08, 2017 02:48AM
Hi Will

i never heard about Prevagen. I did`t find anything about Prevagen and HD searching the internet.May it has an effect on this disease ?
why you choose especially this one?
Trehalose is sugar , I know it may a cause a lot digstiv issues.
My gut don`t tolarte sugar very well, so I may have to take a smaller dosage of trehalose and add another supplements on my list,

Will, I know that exercise is very important in HD,
I do running several times each week for half an hour .

Edited 3 time(s). Last edit at 04/08/2017 05:27AM by sarmiento.
Re: Trehalose
April 09, 2017 09:09AM
I chose Prevagen because of clinical trials that showed it improved memory. I think my memory has remained stable based on my performance on the HDRS tests.

Re: Trehalose
April 09, 2017 09:11AM
I am having some memory testing done soon. What can I expect them to ask during the exam?
Re: Trehalose
April 24, 2017 06:01AM
I just tried to reorder Trehalose from And it's not available there anymore. Anyone recommend a new source? I called them - no answer and e-mailed. No reply yet.

There are others out there. Just looking for a recommendation.
Thanks, Pete
Re: Trehalose
April 24, 2017 07:08AM

I think they're out of business. Try []

Re: Trehalose
April 24, 2017 09:20PM
Swanson trehalose is cheaper when purchased directly from Swanson. Here's a link:

Re: Trehalose
April 27, 2017 11:56AM
Alright thanks all.
Re: Trehalose
May 03, 2017 07:07AM
Hi Laura and pete

May I ask what is about your supplement list?
I know that Laura (?)is taking supplements for years.

thank you both
Re: Trehalose
May 09, 2017 08:40AM
She takes very few supplements. A teaspoon of trehalose in coffee once a day, liquid fish oil once a day, we use a dehydrated berry mix that is mixed with water.

It's a cocktail I mix up for her with dehydrated berries, antioxidant rich dehydrated leafy greens, liquid vitamin d and a crushed remefemine for menaupausal relief. About a mg of melatonin at bedtime although she has never slept well. She has had insomnia since forever.

I wish there was something more she could take. Try to keep our diets clean with home cooking.

Re: Trehalose
June 04, 2017 12:07PM
thanks for the information Pete
Re: Trehalose
June 05, 2017 08:37AM
Pete, just wondering, has your wife ever been confirmed as having restless leg syndrome? My wife had that and it appeared to cause restless bouncing about during sleep which eventually bounced from our bedroom as I couldn't sleep with all the activity. She was taking "Restful Legs" but has not been taking it since being admitted to nursing home, so I don't know if there was a placebo effect or not but she indicated that the holistic plant based Restful Legs helped her.

Sorry I am not much help here, just wondering if there is a clear distinction with HD related sleep issues versus restless leg syndrome. Not that we need more stuff to complicate matters... ugh.
Re: Trehalose
June 05, 2017 12:20PM

Here is a link to Teacher Tablets, which have 100 mg. Trehalose each. I do like taking it in capsule form rather than powder, and it seems to help me remember things!
Re: Trehalose
June 07, 2017 02:23PM
Here is a link to Teacher Tablets, which have 100 mg. Trehalose each. I do like taking it in capsule form rather than powder, and it seems to help me remember things! Judy/tellie
great that it helps you. smiling smiley
tellie, how many tablets are you taking each day?
thank you
Re: Trehalose
June 08, 2017 03:48PM
To tell the truth, trehalose has been one of those things that I only take in spurts - like when I have the pills. I found it difficult to take the ground stuff from Brooklyn Premium, even though I have a sugar bowl full of it most times. Right now, I just take one tablet per day (100 mg).
The most important things I take are Blueberry IQ (1-2 tablets), Concret Creatine (1 tablet per day), Fish Oil or Krill oil (1 tablet a day), and I sometimes take turmeric (from Costco) if I'm feeling wealthy!
I was tested for HD 10 years ago, positive with a CAG of 42. At sixty two years of age, I really don't have any symptoms, and I take those three things BBIQ, Creatine, and Fish Oil religiously. I haven't found a doctor that will recommend any of these things yet! Most of them say, "What you take blueberry flavoring?"

Good luck!
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