Most people reading this forum have heard of the research being done by Dr. Chawnshang Chang on the use of ASC-J9 as a possible treatment for KD. Currently ASC-J9 is not available to the public and hasn't been proven safe and effective for KD. However, there is a related substance called curcumin (pronounced ker-KYOO-min) that is available in some better-stocked health food and herbalist stores.
Both curcumin and ASC-J9 are produced from the turmeric plant. The root of the turmeric plant is dried and ground up, giving the spice turmeric, which is used in certain Indian foods such as curries. Curcumin is then extracted from the turmeric. ASC-J9 is a modified form of curcumin. For more info on curcumin, you may read
Curcumin is used in traditional Indian medicine (called ayurveda) for a variety of ailments. What's really interesting, however, is that curcumin has been proven to have an effect on the androgen receptors in the prostate gland. (For example, in this article: www.charakinternational.com/pdfs/article5.pdf )
The words "androgen receptor" in the previous sentence are very significant, because the androgen receptor in motor neuron cells is an important factor in KD.
All this leads to the question, should KD patients consider purchasing curcumin at their local health food store and taking it until ASC-J9 is proven safe and effective? Nobody knows. Curcumin hasn't been proven effective for KD, and it is a powerful anti-oxidant that hasn't been proven safe in large doses. Certainly you should ask your doctor before taking any supplement including curcumin. On the other hand, turmeric is widely used in Indian cooking, and its extract curcumin is used in traditional Indian medicine, so you may want to consider those facts when reading about it.
If you are interested in curcumin but can't find it at your local store, check this page:
or just do an Internet search on "curcumin".
Please post any feedback, as I am very curious if anyone else finds curcumin interesting, or has tried using it. Thanks.This message has been edited. Last edited by: Dan,
Location: San Francisco California
I attempted to take Circuminoids tablets about a year and a half ago. They were 1000 mg per tablet and to be honest, all I got was really bad stomach cramps.
I've been thinking of resuming taking them again at a lower starting dosage. I'm looking at the bottle right now and the recommended dietary serving is 1 daily or more as directed by a health professional.
Can't remember the reason why, but I think I started with 3. If I start again, I'll begin with only 1 and perhaps increase it as time goes by and or how well my stomach handles it.
BTW... Other than the above side effects, I didn't experience anything positive, but I only did it for a few days.
Ioshimo, taking 3000 milligrams at one time sounds like a lot. The brand of curcumin that I purchased comes in 500 milligram capsules, and the label recommends taking from 1 to 3 daily with meals. I am taking 1 per day.
Even taking 3 per day would be just 1500 milligrams, and taking them after meals on a full stomach would probably lessen the impact on the stomach lining.
Location: San Francisco California
I started taking 1 tablet after dinner yesterday. I plan on continuing this dosage for maybe a week and then increase it to 2 and see if I feel any difference.
I'll try to keep you posted.
I decided to send an email to Dr. Chang and ask him whether there is any point in taking curcumin until ASC-J9 becomes available. Knowing that he is busy, I didn't really expect him to answer, but he did! Here's the reply:
"Curcumin when tested in vitro (on tissue culture cells), has only 1/10 or less of activity in comparison to ASC-J9; furthermore, it is well known that curcumin when entering the body circulation (in vivo) loses activity so quickly (through metabolism), it never reaches a level that exerts any activity. So, to consume lots of curcumin does not provide help for KD for health purposes."
At first glance, this answer is pretty discouraging. However, after pondering it, I realized he didn't say curcumin is totally ineffective, he just said it is 1/10 as effective as ASC-J9 (or less). So I am going to continue taking curcumin anyway. My reasons are:
1. Even if curcumin is only one tenth as effective as ASC-J9, that's still better than nothing, and
2. Some studies, particularly this one and this one have shown that taking a small amount of black pepper with curcumin enhances the absorption. So I'm going to try that.
I have began using curcumin also for about 3 months 2 each 900mg tablets. I do not feel a difference. Maybe i need to increase dose..Bottle says normal dose is 1 or 2 tablets a day.
My local health food store sells 700 mg capsules of curcumin, so that's what I take, one per day. I take it with food and I make sure to use some black pepper to enhance the absorption.
Since I started taking it, I feel a bit stronger and have less trouble with cramps, but of course I cannot prove it is due to the curcumin.
If anyone else has tried, please post your experience, so we can all learn from it.This message has been edited. Last edited by: Dan,
I have been taking curcumin with piperine every day for about one year. I have noticed one thing that is interesting.
Before taking curcumin and piperine, I used to have fasciculations, which are the little twitches in the facial muscles, nearly every day. Now I get them only once or twice per month, or less.
I have no idea if this is medically significant, but I do think it is interesting; and I am glad not to have the fasciculations.This message has been edited. Last edited by: Dan,
Just noticed that yet another turmeric extract is under scientific investigation. The new extract is called "curcumol", and it is apparently being studied by both Israeli and Chinese scientists as a cancer treatment.
Here's a link and a URL
for the study.
Dan, thanks for keeping us up to date on this. We hope to hear some positive news on J9 this fall. We all have our fingers crossed.
hi my friend,
i inject leuprorelin acetate every month, musle became quiet, no too much sex actives
1500mg curcumin7x/day make me feel hot, and seems good to reduce hand viberation
300mg Coq10/day give me more energy
inject methycobal every 2 month, it get rid of musle pain
twice swiming /week, improve breath/heart musle
running more 3000 m/ 4 days during my work
hot steam shower/week, it kill sperm
that my sister a chinese doctor give me suggestion
I am 38 years old GAC 47, find KD two years,
because I can not run more than 100 m, can not continue waking more 300m when I am 37 years old
my sister reasearch on this disease,
she is crayer, her KD patient who take leuproelin over 3 years, the kd progress looks stop
she think the polyQ witch is produced during the sex activites because a large amount AR can happen at that time, so she suggest me control this, almost No Monk have this KD disease by her reaserch
God make every thing is balanced, polyQ plug motor nerve cell and musle cell when the poly Q accumulation rate exceed dissolve rate
so relax and sleep good , it good for polyQ dissolve in cell,
less sex activity reduce the PolyQ accumulation in cell,
musle cell more easy dissolve PolyQ than nerve cell
that is my sister told me
Here's a new story about research on Curcumin.
The spice of life: Curry’s main ingredient has more to offer than good flavor
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614