Re: suppliments / where to start?

[Guest guest]

You can purchase 200 mg capsules of CoQ10 at Walmart.

There are 50 in each bottle and it costs around

$26.75. Some of the stuff I've seen online has more

fat in it and can be difficult for some people to

digest (if they have problems with fats).

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

Hi ,

That might be a good price for CoQ10 but if you buy CoQ10 over the counter you

are not getting the quality of assurance or a guarantee like you would get when

you buy from a reputable company. OTC meds don't have the FDA on their backs

and don't even have to mention what additives they put in their products. Let's

say a company is selling CoQ10 200mgs, that doesn't mean you are getting 200mgs.

of CoQ10.

I am not saying to buy from Epic, but I will tell you that Many of us with Mito

buy our CoQ10 from Epic or a reputable company.

So check out the company you buy from.

Hugs,

Ann-Marie

Re: suppliments / where to start?

You can purchase 200 mg capsules of CoQ10 at Walmart.

There are 50 in each bottle and it costs around

$26.75. Some of the stuff I've seen online has more

fat in it and can be difficult for some people to

digest (if they have problems with fats).

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

My understanding is that if you call Epic and tell them you are

taking CoQ10 for a mitochondrial disease, you will get a discount.

I've done this, but it was a while ago, can anyone else elaborate?

Isn't a copy of Shoffner's " mito cocktail list " in the file section

of this website (or maybe another doctor's?). The list I have

mentions a lot of suggested dosages, in addition to specific

medications/supplements.

Take care,

RH

>

>

> Hi ,

>

> That might be a good price for CoQ10 but if you buy CoQ10 over the

counter you are not getting the quality of assurance or a guarantee

like you would get when you buy from a reputable company. OTC meds

don't have the FDA on their backs and don't even have to mention what

additives they put in their products. Let's say a company is selling

CoQ10 200mgs, that doesn't mean you are getting 200mgs. of CoQ10.

>

> I am not saying to buy from Epic, but I will tell you that Many of

us with Mito buy our CoQ10 from Epic or a reputable company.

> So check out the company you buy from.

>

> Hugs,

> Ann-Marie

>

> Re: suppliments / where to start?

>

>

> You can purchase 200 mg capsules of CoQ10 at Walmart.

> There are 50 in each bottle and it costs around

> $26.75. Some of the stuff I've seen online has more

> fat in it and can be difficult for some people to

> digest (if they have problems with fats).

>

>

>

>

>

> Mom to the two best kids in the world!

> http://www.caringbridge.org/visit/thomasandkatie

>

> __________________________________________________

>

[Guest guest]

Yes, if you tell Epic you have mito and would like the discount they

will give it to you. They don't require proof.

ohgminion wrote:

>My understanding is that if you call Epic and tell them you are

>taking CoQ10 for a mitochondrial disease, you will get a discount.

>I've done this, but it was a while ago, can anyone else elaborate?

>

>Isn't a copy of Shoffner's " mito cocktail list " in the file section

>of this website (or maybe another doctor's?). The list I have

>mentions a lot of suggested dosages, in addition to specific

>medications/supplements.

>

>Take care,

>RH

>

>

>

>

>

>>Hi ,

>>

>>That might be a good price for CoQ10 but if you buy CoQ10 over the

>>

>>

>counter you are not getting the quality of assurance or a guarantee

>like you would get when you buy from a reputable company. OTC meds

>don't have the FDA on their backs and don't even have to mention what

>additives they put in their products. Let's say a company is selling

>CoQ10 200mgs, that doesn't mean you are getting 200mgs. of CoQ10.

>

>

>>I am not saying to buy from Epic, but I will tell you that Many of

>>

>>

>us with Mito buy our CoQ10 from Epic or a reputable company.

>

>

>>So check out the company you buy from.

>>

>>Hugs,

>>Ann-Marie

>>

>> Re: suppliments / where to start?

>>

>>

>> You can purchase 200 mg capsules of CoQ10 at Walmart.

>> There are 50 in each bottle and it costs around

>> $26.75. Some of the stuff I've seen online has more

>> fat in it and can be difficult for some people to

>> digest (if they have problems with fats).

>>

>>

>>

>>

>>

>> Mom to the two best kids in the world!

>> http://www.caringbridge.org/visit/thomasandkatie

>>

>> __________________________________________________

>>

[Guest guest]

Kim, I will add that, while subtle improvement over time seems to be the

more common response, for me cofactor therapy--when it works--has produced

dramatic improvement quickly, but symptom specific. That is, when it works,

it addresses specific problems and each supplement had addressed different

issues, which makes sense. Riboflavin and Carnitor (started 1988 months

apart) both produced dramatic improvement in specific symptoms within a few

days, so interpretation was clear. Later I tried short trials off to confirm

and yes, the same symptoms that had improved flared dramatically when off.

We have always added any changes cautiously, slowly, months, not weeks, as

some of them like CoQ10 and MCT oil have had dramatic negative effects too.

I was on riboflavin for 4 months, increasing dosage slowly per week, before

we added Carnitor. For me this snail pace has been necessary 1. to determine

max effective dose 2. because my disease is so unstable if takes months of

observation to make sure there are no negatives attached to the improvement.

Plus one always has to consider the placebo effect when there is no

objective way to measure improvement. Conventional wisdom says placebo

effects tend to be short-lived, days or weeks, not months, but whether that

is always true I don't know.

Another combo started months apart in 2004 has benefited me greatly, and

that is creatine monohydrate and K-Phos Neutral. They have improved muscle

strength and muscle tolerance for activity significantly by boosting

phosphocreatine in muscle, an alternate source of ATP (fuel for muscle).

Creatine is OTC but K-Phos Neutral is rx. However, studies have shown

similar benefit with creatine alone.

Oh yes, rx potassium has helped tremendously with peripheral neuropathy. I

like the idea that the cofactors are actually getting at the root of the

problem, by boosting the impaired metabolic pathways, whereas pain

management simply muffles the pain message. Of course pain management is

better than nothing, but I prefer to get at cause rather than effect, if

possible.

BTW, I have always worked with my doctors on the mito cocktail, even though

they are not knowledgeable or experienced. But I always ask before starting

anything and request their input and supervision. It's a courtesy really, a

gesture of respect aimed at maintaining a good working relationship, but

sometimes they do offer good advice about how to proceed.

Hope it goes well for you!

Barbara

> While I commend your approach, I should point out that my experience, and

I

> believe that of many, is that a particular improvement is subtle and takes

a while to

> show. There's also a lot of " noise " in the experiment, e.g. day to day

variations of

> what and when you eat, sleep, and exercise. So it might be quite a while

to

> complete your trials. :-)

>

> Good luck!

> Steve D.

> suppliments / where to start?

>

>

> Hi, I want to start trying some of the mito suppliments, but I want to

> try one at a time.

> Which ones would be most important to try first, and what type of

> improvement might I see from them? Where would I find them?

> Thanks,

> Kim

[Guest guest]

I wonder if anyone has bought CoQ10 from Whole Health Products

www.wholehealthproducts.com ? I have recently started (3 mths ago) 600 mg

per day and not sure whether there is a difference so wondering if it's me or

the capsules. The attraction is that they offer 300 mg capsules at $39.98 for

60 which seems good to me.... pamela

Re: suppliments / where to start?

You can purchase 200 mg capsules of CoQ10 at Walmart.

There are 50 in each bottle and it costs around

$26.75. Some of the stuff I've seen online has more

fat in it and can be difficult for some people to

digest (if they have problems with fats).

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

--- peetie peetie@...> wrote:

> That might be a good price for CoQ10 but if you buy

> CoQ10 over the counter you are not getting the

> quality of assurance or a guarantee like you would

> get when you buy from a reputable company. OTC meds

> don't have the FDA on their backs and don't even

> have to mention what additives they put in their

> products. Let's say a company is selling CoQ10

> 200mgs, that doesn't mean you are getting 200mgs. of

> CoQ10.

The FDA isn't on the back of anyone who makes a

vitamin or supplement. They don't regulate them. Epic,

etc. may be a good company but I don't know that there

is any proof that their products are better than

anyone else's. I have not heard any of the mito gurus

having a preference for any one brand of supplements.

Some supplements are prepared with a lot of oil and

many of us need to be careful about fat grams. If

insurance is covering your CoQ10, they'll probably

require you to use a less expensive brand. We're using

over the counter supplements and generic Carnitor and

have had much improvement.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

Epic's Q-gel has FDA orphan drug statis, so some testing has been

done. It is in various forms with and without Vit. E oil, but doesn't

need fat to be absorbed like all the rest of it. Since it is more

bio-available, most people can take less. It is being recommended by

some of the mito docs and Dr. Cohen is the one who was proactive in

getting Tishcon (maker) to give the discount to mito patients. I buy

the 1000 capsule bottle of 60 mg. I get a discount of $35.00.

laurie

>

>

> --- peetie peetie@...> wrote:

>

> > That might be a good price for CoQ10 but if you buy

> > CoQ10 over the counter you are not getting the

> > quality of assurance or a guarantee like you would

> > get when you buy from a reputable company. OTC meds

> > don't have the FDA on their backs and don't even

> > have to mention what additives they put in their

> > products. Let's say a company is selling CoQ10

> > 200mgs, that doesn't mean you are getting 200mgs. of

> > CoQ10.

>

> The FDA isn't on the back of anyone who makes a

> vitamin or supplement. They don't regulate them. Epic,

> etc. may be a good company but I don't know that there

> is any proof that their products are better than

> anyone else's. I have not heard any of the mito gurus

> having a preference for any one brand of supplements.

> Some supplements are prepared with a lot of oil and

> many of us need to be careful about fat grams. If

> insurance is covering your CoQ10, they'll probably

> require you to use a less expensive brand. We're using

> over the counter supplements and generic Carnitor and

> have had much improvement.

>

>

>

> Mom to the two best kids in the world!

> http://www.caringbridge.org/visit/thomasandkatie

>

> __________________________________________________

>

[Guest guest]

Thanks everyone for the suggestions. I've had a busy weekend, so

didn't get to read responses until this morning.

Because I haven't gone for a fresh biopsy, I don't have a definate

diagnosis. That makes me a bit concerned about starting things. I

skipped my 6 mo appointment at the MDA, but will probably go later

in the spring. I guess I could wait to start anything until I go

back and talk to him.

The cost is also a concern.

Kim

>

> Kim, I will add that, while subtle improvement over time seems to

be the

> more common response, for me cofactor therapy--when it works--has

produced

> dramatic improvement quickly, but symptom specific. That is, when

it works,

> it addresses specific problems and each supplement had addressed

different

> issues, which makes sense. Riboflavin and Carnitor (started 1988

months

> apart) both produced dramatic improvement in specific symptoms

within a few

> days, so interpretation was clear. Later I tried short trials off

to confirm

> and yes, the same symptoms that had improved flared dramatically

when off.

> We have always added any changes cautiously, slowly, months, not

weeks, as

> some of them like CoQ10 and MCT oil have had dramatic negative

effects too.

> I was on riboflavin for 4 months, increasing dosage slowly per

week, before

> we added Carnitor. For me this snail pace has been necessary 1. to

determine

> max effective dose 2. because my disease is so unstable if takes

months of

> observation to make sure there are no negatives attached to the

improvement.

> Plus one always has to consider the placebo effect when there is no

> objective way to measure improvement. Conventional wisdom says

placebo

> effects tend to be short-lived, days or weeks, not months, but

whether that

> is always true I don't know.

>

> Another combo started months apart in 2004 has benefited me

greatly, and

> that is creatine monohydrate and K-Phos Neutral. They have

improved muscle

> strength and muscle tolerance for activity significantly by

boosting

> phosphocreatine in muscle, an alternate source of ATP (fuel for

muscle).

> Creatine is OTC but K-Phos Neutral is rx. However, studies have

shown

> similar benefit with creatine alone.

>

> Oh yes, rx potassium has helped tremendously with peripheral

neuropathy. I

> like the idea that the cofactors are actually getting at the root

of the

> problem, by boosting the impaired metabolic pathways, whereas pain

> management simply muffles the pain message. Of course pain

management is

> better than nothing, but I prefer to get at cause rather than

effect, if

> possible.

>

> BTW, I have always worked with my doctors on the mito cocktail,

even though

> they are not knowledgeable or experienced. But I always ask before

starting

> anything and request their input and supervision. It's a courtesy

really, a

> gesture of respect aimed at maintaining a good working

relationship, but

> sometimes they do offer good advice about how to proceed.

>

> Hope it goes well for you!

> Barbara

>

> > While I commend your approach, I should point out that my

experience, and

> I

> > believe that of many, is that a particular improvement is subtle

and takes

> a while to

> > show. There's also a lot of " noise " in the experiment, e.g. day

to day

> variations of

> > what and when you eat, sleep, and exercise. So it might be quite

a while

> to

> > complete your trials. :-)

> >

> > Good luck!

> > Steve D.

> > suppliments / where to start?

> >

> >

> > Hi, I want to start trying some of the mito suppliments, but I

want to

> > try one at a time.

> > Which ones would be most important to try first, and what type

of

> > improvement might I see from them? Where would I find them?

> > Thanks,

> > Kim

>