Comment

Comment by Debbie Schneider on August 22, 2014 at 4:16pm

Hi, we managed to reduce our sons levels by giving him COQ10 400mg per day with almond butter to help with its absorption.  We also give 5000iu of Vitamin D drops in with this.  An anti inflammatory diet is best with lots of fresh fruit and vegetables, and more alkaline diet the better.  We also give Magnesium, Zinc, Acetyl L-Carnitine, Colloidal Silver (due to no immunity with being on steroid Deflazacort), and probiotics. Want to start vege juicing but need to start slowly as he already has lots of supplements in drinks as cannot swallow pills etc.

Comment by JAYANTO KUNDU on April 1, 2014 at 6:29am

Dear  All,

Please  help me  how to  reduce CPK , as my  son  is now  having  CPK  level of 24800.

Thanks With  Regards

Jayanto  Kundu

Comment by Manoj Nag on January 27, 2012 at 3:59am

Dear All,

Is Accupressure Thereapy (Treatment) is effective to treat/cure the Duchhane Muscular Dystrophy..?

Thanks with Regards

Manoj Nag

Comment by Manoj Nag on January 27, 2012 at 3:55am

Dear All,

Are any suppliment foods/medecines are effective to reduce the CPK level and provide strenght to muscules.If yes then give the details of suppliment foods/medecines with manufacturers details.

Thanks with Regards

Manoj Nag

09920809717

manojnag2003@yahoo.co.in 

Comment by Ambrish Kapadia on November 11, 2011 at 2:02pm

Dear Nimi,
thanks for your piece of advice,but here in india doctors dont prescribe these drugs like lisinopril or losartan or spirinolactone without having heart problem for dmd and chemists do not give without prescription.

If u know any families in US and Canada who are using these drugs on young kids of 4 -5 yrs old could pls share their contact details so i can show to doctors here and convince them to use on my son.

Will appreciate your comments on this.
Rgs ambrish

Comment by Nimi Langer on November 11, 2011 at 1:47am

Hi Ambirsh:

 

From my research it is better go give losartan and ace invibitors before problem in th heart shows.

I will start giving at the age of 6

In the states and Canada people give losartan/ace inhibitor much earlier (I know of a few that start at age of four.

Good luck

Nimi

Comment by Ambrish Kapadia on November 10, 2011 at 11:35pm

Hi Nimi,
from your reply to manoj ,it seems u are using losartan for 5 yr old Hadas.pls clarify.
Doctors in india will prescribe losartan only if dmd patient has heart dys function which normaly occurs by the age of 10 and up.
So im just curious to know is losartan and other heart drugs like lisinopril and spironolactone are ok to use even before heart problem arises.
Rgs ambrish (from mumbai india) tel +91 9870304838

Comment by Nimi Langer on September 25, 2011 at 2:05am

Hi Manoj Nag,

I am not an expert nor a doctor. Being around though I see what works for others:

 First level steroids (with vitamin D and Calcium)

Second Level: idebenone, Losartan/(other blood pressure drugs)

Third level: protandim, multi vitamin Green tea

Fourth level: Vitamin E, antioxidant food, omega 3

 

I hope this helps. Let me know if you need any clarifications.

Again I'm just a father from the community

Nimi

 

Comment by Manoj Nag on September 22, 2011 at 9:18am

Can you suggest me diet to lower the CPK level and improve the muscles strength

Comment by Nimi Langer on September 19, 2011 at 2:28pm

thanks for sharing this info. I wish a more orgenized study on diet and its effect would be done.

We parents could decide to do it. I thought of doing no milk and red meet diet and measure the CPK but for all these experiements we need to be a group of parents. Hopefully one day.

• ‹ Previous
• 1
• 2
• Next ›
• Page