I was diagnosis with KD patient ten year ago and find my physical movement is very bad and falling often recently. I took Turmeric 400mg x 3 per day for a week. It improve a lot.
I don't need use hands to get in a bus at momnent. I can stand easily with my single leg only. No problem on my stomach if we take it one after the meal.
thanks for Dr. Chawnshang Chang
I'll update myself aftere taking several month.
Do other guy have positive effect like me

James. thanks for sharing. Yes, please keep us advised of how things are going and what your doctor says about why Turmeric might be helpful.

FYI ASC-J9 is tumeric based.

I found turmeric at walmart for $7 for a bottle of 90, 500mg tablets. So, I bought some yesterday and started taking it along with the protien shakes I drink once a day.

I know there is no scientific evidence it helps, but I figure at $7, it can't hurt to try.

In searching for info related to Turmeric, Curcumin, Curcumol, ASC-J9, I haven't found anything lately. Most info is from 2007-2009. Everybody seemed so excited back then but nothing since. Has it not panned out to be such a breakthrough?

Mike, NIH provided a grant to further this research. The complete article is on the KDA website under Promote Research.

"AndroScience Corporation Awarded a $3.8 Million, 3-Year Milestone-Driven, Cooperative Translational Research Grant from the NIH to Develop an Oral Treatment for Spinal Bulbar Muscular Atrophy (Kennedy's Disease)" http://www.kennedysdisease.org...rch/research-updates

Thanks Bruce! That is encouraging. I hope they come up with something.

Here is some news about curcumin that may be interesting for some. There are some new formulations of curcumin that are claimed to have better absorption and higher bioavailability. Keep in mind that curcumin taken by itself is partially broken down in the intestines or excreted, and therefore a majority of the curcumin is not absorbed into the body.

The previous answer to curcumin absorption was to take some piperine (black pepper) with the curcumin. The piperine is believed to suppress certain intestinal enzymes that break down the curcumin, so the curcumin would have time to be absorbed.

The new formulas, known as BCM-95, use either lecithin or phosphatidylcholine to protect the curcumin from breakdown and enhance its absorption. The makers claim the new formula is up to six times more bioavailable than curcumin by itself.

For more information, you may want to read the following links:
BCM-95 website

LEF website

NOW website

For my part, I am switching to the new highly-bioavailable curcumin. I have been taking curcumin with piperine for about 18 months now. During that time I have noticed slight worsening of some symptoms (weakness in legs) and maybe slight improvement in other symptoms (fasciculations).

Keep in mind there are no studies that show whether or not oral curcumin is safe or effective, and it is not FDA-approved.

This message has been edited. Last edited by: Dan B,

HI, everybody,

The doctor just give the Vitamin B to my father.
She said that other drugs did not prove to be effective.

But i want to try other drugs (such as leuprorelin and methycobal)

What should i do ?

quote:

Originally posted by zhu:
HI, everybody,

The doctor just give the Vitamin B to my father.
She said that other drugs did not prove to be effective.

But i want to try other drugs (such as leuprorelin and methycobal)

What should i do ?

Mr.Zhu
It seems the surname is a chinese..
I have been taken Vitamin B for 10 year but it can't stop my wasting process at all.
I felt my strength lower weekly by weekly,monthly by monthly.
The main advantage of taking Vieamin B is to minimize the frequncy on having inflamed mouth sores.
My case becomes worse and worse a couple month ago and drop twice on the street within a week.
I really plan to sit on armchair for the rest of my life.
now, I change to take Turmeric ...
let see what will improve...

good luck!!!

Hi Mr.Wong
Thanks for your reply...
You are right, i am chinese.
You came from TaiWan or hongkong?


Now i buy CoQ10 and Turmeric ,

I dont know if Chinese medicine can improve the disease . A friend suggested to acupuncture.

And,will you try to use "leuprorelin or methycobal or dutasteride"

good luck!~!

Hi Zhu
I come from Hong Kong.
My CK value has increased from 800 U/L to 3000 U/L ( limit : 170 U/L) since this 10 year and went to hospital for pneumonia a year ago.
My doctor gave me mecobalamin ( vit. B)
However, it is no use at all.
As I know, the nervous cell was poisoned because of too long CAG not get hurted .
the root treatment is to reduce this "obstacles" to affect the normal nervous cell.
I haven't taken any acupuncture, leuprorelin or methycobal or dutasteride at all becasue I know they are not
the straight and correct treatment method. I expect they may release some pain or litte bit lower the process.
Now, I really rely on ASC-J9 release possibly in 2014.
Everyone knows the result is not guarrante so far.

Hi
Mr.Wong
Thank you for your reply. I live in Hong Kong now . Hope that ASC-J9 success soon.
keep in touch~!

Keep in touch. I wish you good mood.

Hi Zhu
Thanks!
to have hope rather than hopeless!
In hong kong, there is no such organisation for SBMA patient but SMA .etc.who was suffered since in the childhood age.
I wish self-encouragment and experience sharing being a good way to release my ill feeling in the rest of my life.
good luck>>>