RE: Re: $ HELP FOR CARNITOR

[Guest guest]

Hi everyone,

I knew I had gotten this info, I just had to find it. From what I've seen

a lot of you guys pay for carnitor out-of-pocket. If insurance or

medicaid absolutely will not pay for the Carnitor, these people should help.

They also help with some other prescription drugs if insurance or medicaid

doesn't cover.

The phone number is 1- or 1-

This is through The National Organization for Rare Diseases (NORD) and

Sigma-Tau Carnitor Drug Assistance Program .

It says that they will pay for it as a last resort for patients whose

federal,

state, and private health insurance and other resources do not cover the

cost of Carnitor.

I had to share this, hopefully it will help somebody. Like I said they do

other drugs too, not sure which, but they work with the manufacturers.

If somebody is paying out-of-pocket it's worth a call.

Lois

> [Original Message]

>

> To: <Mito >

> Date: 3/25/2005 8:21:16 PM

> Subject: Re: mtDNA test results

>

>

>

> Sorry to hear that your " cocktail " is all out of pocket expense. I

> just wanted to point out that some insurances do cover the meds. My

> insurance covers all of my son's medications (thiamine, riboflavin,

> coQ, NADH) and Medicaid picks up the remaining 20%. It is my

> understanding that there are " medicinal grade " vitamins and

> supplements since most of those on the shelf are not regulated

> potency wise by the FDA.

>

> Beth

>

>

> >

> > HI Kim, Unfortunely it sounds like to me your son has hit the mito

> > jackpot. It is amazing when you write down all the problems and see

> > it in black and white, let the knew doc see it just like that.

> > Congenital Myopathy can be mito because of all the other issues

> > going on with your son. But then again that diagnosis Congenital

> > Myopathy is such a huge range of many neuromuscular diseases, but

> > it could be mito. There is a essay written by a man (true story)

> > called Growing up as a , he has congenital myopathy, when

> you

> > read it there are no other organs involved except skeletal

> muscles.

> > I wouldnt worry about the negative mtdna blood test, there are so

> > many mutations they havent even named yet. Matts one neuro, since

> > they havent found the specific mutation yet (they are perty sure

> its

> > melas with complex one), has been calling Matts mito Wild Mattman

> > Disease, and we always joked that maybe it should be in the books

> > that way. How is the carnitor working for your son, Matts not on

> > that yet, I on the other hand really see improvement in myself with

> > Carnitor, q-10 and creatine. Matts metobolic specialist has told

> me

> > they have so many different combos of supplements now, and of

> course

> > they are all out of pocket expenses. What can ya do. I hope the

> > doc in Texas can help him, and that she can figure out a solid

> > diagnoses, its the not knowing that really scares me the most. God

> > Bless, Barb

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>