RE: A recommendation from Dr. Cohen about COQ10/JONI

February 19, 2004

Suhad,

I thought I would let you know what Maggie is on and we think that it has helped her. She has been on this cocktail since her diagnosed with Leighs at 7 mos. old.

(this recipe makes one syringe of vitamins and she takes it three times a day)

CCS pays for all of her vitamins by looking at your email address are you from California and if so do you have CCS? I hope this gives you some ideas. Valina Maggies mom

Carnitor 330mg tablet 1/2 tablet

Thiamine (B-1) 50 mg tab 1 1/2 tablet

Riboflavin (B-2) 25 mg tab 1 1/2 tablet

Co Q 10 60 mg tab 1/4 tablet

Alpha Lipoic Acid 25 mg cap 1capsule

Vitamin E 15IU (Aquasol E) .9 ml

Vitamin C (Cecon) .75 ml

Poly-Vi-Sol (Enfamil) 1 ml once daily

Also she is on DCA she takes that 2x's a day

suhad1970@... wrote:

Dear Joni,

Thank you so much for the information on the CoQ10. Our mito doctor just told us to give Leanna vitamins and gave us the dosage. He did not seem to know much about what the best kind were etc. In fact, Leanna has been on CoQ10, L-Carnitine, and Vit B50 complex from GNC for a year now, and I am not seeing any change. I want to try the CoQ10 from Epic health. I also want to know if the same goes for the L-Carnitine and Vit B50. Do they carry a superior brand of these also, or is the GNC brand just fine. I hate wasting my time giving her vitamins which are not doing the best job they could. God knows how hard it is for our kids to take them to begin with. It seems to me that I can never find someone to tell me

what is the best. I want to give Leanna only the best, but I need help from people with experience. In fact, I was giving her the COQ10 from Costco for about 7 months when someone told me that kind was not hydrosoluble, and then I went to the GNC brand. What a wast, huh?

I very much appreciate your help, and anyone else’s.

Thanks,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

From: loerco333 Sent: Wednesday, February 18, 2004 12:09 PMTo: Mito Subject: A recommendation from Dr. Cohen about COQ10

We have consulted Dr. Cohen at Cleveland Clinic Foundation regardingthe mito disorder. He recommended that we get our COQ10 at a company named Epic( www.epic4health.com ) (1-) because it is 100% hydrosoluble. It is called Q-Gel Mega COQ10. We were getting it atGNC before our visit at CCF but this one does work better because of it's special formulation. It is expensive but worth it if the patientgets more benefit. Dr. Cohen's patients get a 10% discount if you tell them you are his patient and it's for mito. He DOES NOT have anypersonal benefit by recommending this one over others. He said thisone simply gives more benefit than other brands. We testify that it does work better than others that we used before. I am not selling or dealing it, just wanted to put the info. out there and let you decideif you wanted to check it out for yourself. Our insurance does not cover anything except his amytriptylin, Carnitor

and cyproheptad.We have to buy out of pocket but COQ10 has helped more than anythingelse he has taken. Best wishes to all of you. Hope our experience helps someone. JoniPlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

February 19, 2004

I am new to this....our daughter (2 1/2 years old) had COX

deficiency (Complex IV)....we are just trying to figure this all

out. She is taking Carnitor (prescription), Riboflavin and

CoQ10....are there really different " equivalencies " of each

depending on where it is purchased and/or brand???? Please

advise....thanks....Kris Kovalcik

(mkovalci@...)

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> Dear Joni,

>

> Thank you so much for the information on the CoQ10. Our mito

doctor just told us to give Leanna vitamins and gave us the dosage.

He did not seem to know much about what the best kind were etc. In

fact, Leanna has been on CoQ10, L-Carnitine, and Vit B50 complex

from GNC for a year now, and I am not seeing any change. I want to

try the CoQ10 from Epic health. I also want to know if the same goes

for the L-Carnitine and Vit B50. Do they carry a superior brand of

these also, or is the GNC brand just fine. I hate wasting my time

giving her vitamins which are not doing the best job they could. God

knows how hard it is for our kids to take them to begin with. It

seems to me that I can never find someone to tell me what is the

best. I want to give Leanna only the best, but I need help from

people with experience. In fact, I was giving her the COQ10 from

Costco for about 7 months when someone told me that kind was not

hydrosoluble, and then I went to the GNC brand. What a wast, huh?

>

> I very much appreciate your help, and anyone else's.

>

Thanks,

>

> Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

>

> Samya's Memorial Site: www.Samya.org

>

> Email: Suhad1970@s...

>

> Alt Email: Suhad@S...

>

> AiM Chat: Suhad1970

>

> ---------------------------------

>

> From: loerco333 [mailto:jonih@2...]

> Sent: Wednesday, February 18, 2004 12:09 PM

> To: Mito

> Subject: A recommendation from Dr. Cohen about COQ10

>

> We have consulted Dr. Cohen at Cleveland Clinic Foundation

regarding

> the mito disorder. He recommended that we get our COQ10 at a

company

> named Epic

> ( www.epic4health.com ) (1-) because it is 100%

> hydrosoluble. It is called Q-Gel Mega COQ10. We were getting it

at

> GNC before our visit at CCF but this one does work better because

of

> it's special formulation. It is expensive but worth it if the

patient

> gets more benefit. Dr. Cohen's patients get a 10% discount if you

> tell them you are his patient and it's for mito. He DOES NOT have

any

> personal benefit by recommending this one over others. He said

this

> one simply gives more benefit than other brands. We testify that

it

> does work better than others that we used before. I am not

selling

> or dealing it, just wanted to put the info. out there and let you

> decide

> if you wanted to check it out for yourself. Our insurance does

not

> cover anything except his amytriptylin, Carnitor and cyproheptad.

> We have to buy out of pocket but COQ10 has helped more than

anything

> else he has taken. Best wishes to all of you. Hope our

experience

> helps someone. Joni

>

> Please contact mito-owner with any problems or

questions.

>

> Please contact mito-owner with any problems or

questions.

>

February 19, 2004