Q10 / Cocktail

March 31, 2004

I hesitate to ask this question because I'm sure it comes up

frequently - but I've looked through the archives and files and

haven't specifically found the answer I need - so I'm hoping it's

alright to ask. My husband has mito, he's 28. We don't have good

medical support for him (a mito doc) but we've discussed it a lot,

and feel it's time for him to try the mito cocktail. What I'm

looking for is specifics. Where is the best place to order from?

Best quality for lowest price? Should I get the combo of Q10 with L

Carnitine? Any tips on where to get Carnitor? My research has

caused me to make an educated guess of starting at 100mg and go up

from there. He weighs 210lbs - not sure what that is in kg. Thank

you so much for any help you can provide. I'm getting confused by

all my research and shopping around.

Thank you!

Amy

March 31, 2004

Mitochondrial diseases are separate illnesses, related because they

involve a dysfunction of the mitochondria. If you don't have a local

mitochondrial disease specialist, you should consider going to a MDA

clinic or finding a neurologist who specializes in neuromuscular

diseases.

Some short answers - I'm not aware of anyone selling " the mito

cocktail " , the list I have of possible treatments was given with my

confirmed diagnosis via fresh muscle biopsy. The " mito cocktail " we

talk about is actually different depending upon which doctor you are

dealing with (although there is some consensus).

And where to get Carnitor - it is a prescription drug.

I know it's frustrating if your loved one is suffering and it seems

there are pat answers out there, but many of us have found that the

answers are specific to each person. Some treatments may do more

harm than good depending on what variety one has. For example, I do

poorly on CoQ10 and Carnitor, but well on NADH. Most people seem to

think CoQ10 helps them, but I know how much people take ranges from

60 mg/day to 1,000 mg/day...

We are not doctors, we may be able to give some ideas, but finding

adequate medical care is a big part of fighting these diseases. If

you let us know a general geographic area, we might have some ideas

for doctors to try.

Take care,

RH

> I hesitate to ask this question because I'm sure it comes up

> frequently - but I've looked through the archives and files and

> haven't specifically found the answer I need - so I'm hoping it's

> alright to ask. My husband has mito, he's 28. We don't have good

> medical support for him (a mito doc) but we've discussed it a lot,

> and feel it's time for him to try the mito cocktail. What I'm

> looking for is specifics. Where is the best place to order from?

> Best quality for lowest price? Should I get the combo of Q10 with

L

> Carnitine? Any tips on where to get Carnitor? My research has

> caused me to make an educated guess of starting at 100mg and go up

> from there. He weighs 210lbs - not sure what that is in kg. Thank

> you so much for any help you can provide. I'm getting confused by

> all my research and shopping around.

>

> Thank you!

>

> Amy

March 31, 2004

Amy first of all I'm so glad that you're supporting your husband

through this tough time. It's great that you have taken the time to

do some investigating of your own too. I have to agree with RH on

this one however that you can do more harm than good sometimes with

the supplements. I was told that they are only successful in

reducing symptoms for 20% of the mitochondrial patients. That means

80% still suffer on despite taking the " cocktail. "

The MDA is a good source of information and an excellent starting

point no matter where you live. I've waited more than 20 years for

a diagnosis so I know how frustrating it can be. It's gotta be

tougher to be on the outside watching your husband go through it and

not knowing what to do for him. I don't envy you. I hope that you

will consider the MDA and possibly a university affiliated hospital

even if you have to drive quite a ways for the initial evaluation.

A university (teaching hospital) generally has more familiarity with

a variety of diseases and conditions as well as treatments so that's

why I suggest it. They, as well as the MDA, can work with a local

docs to oversee your husbands care.

The " mito cocktail " does vary greatly depending upon the exact

condition and symptoms that your husband has. We may all suffer

from mitochondrial disease but you'd be surprised at how varied the

symptoms are and how severe or mild it can be. No two people are

the same in how their bodies respond.

It's important to note that supplements are not regulated by the

Food and Drug Administration. This means that there may be

inconsistencies between brands. Subsequently, some supplements

(even though they are commonly made of " natural " ingredients) can be

extremely harmful and even fatal to some people. I wouldn't just

experiment with dosages or with which ones to have him take. Please

let an doctor make this decision. Medications are highly regulated

so the FDA knows what side-effects may be commonly associated with

taking them and which ones cannot be taken with each other. Since

the FDA does not regulate supplements they do not have this

information. ***Some supplements can be deadly if taken with

certain other medications.

Best of luck and I hope you get the help and answers for your

husband.

Hugs,

bug

March 31, 2004

You have been given two wise answers.

I am on the road of seeking information myself, and relatively new to

this site. I was diagnosed 18 months ago, and I have learned it takes a

long time to understand the information available, and to try to

interpret it for myself. Be guarded against believing the worst. Some

cases can be mild. And we don't all have all the symptoms. In

retrospect, I am sure I have had a mild mito condition my whole life.

I am almost 60 now, and have managed many things with determination,

carefully prioritizing my activities, and following general good

health practices, all of which my limited energy and chronic pain

forced me to do, way before I was diagnosed. Of course, there are

never any guarantees.

He should take any med or supplement cautiously, certainly under the

supervision of a doctor if at all possible. Try to keep track of

changes in changes of how he feels in relation to what he takes.

Know that you must both be very patient in finding answers and

strategies. Keep reading, looking, talking to people. You will learn a

lot from people here by seeing their answers on various topics. The

MDA certainly is a good place to start. Also, I like the UMDF.

Some good sites to start. Of course you can also do a google search.

http://www.mdausa.org/

http://www.umdf.org/

http://www.ninds.nih.gov/health_and_medical/disorders/mitochon_doc.htm

To find kilos, divide the weight in pounds by 2.2. So, 210 pounds

equals 95.45 kilos.

Q10 is a common recommendation. Many people feel QGel is more

bioavailable. I myself did a lot of checking, and decided that was the

best option right now. Information about QGel can be found at the

Tischcon site. They make it.

http://www.tishcon.com/index.html

I get my Qgel at Swanson....I started it recently and have not found a

cheaper price on it.

http://www.swansonvitamins.com

I like to order it by phone....18004374148 (I ask for Joanne in the

product information department. She has been very nice to me)

Keep reading, reading and rereading. Be patient.

There will be a lot of information here as people speak about

themselves.

Good luck

Sunny

> I hesitate to ask this question because I'm sure it comes up

> frequently - but I've looked through the archives and files and

> haven't specifically found the answer I need - so I'm hoping it's

> alright to ask. My husband has mito, he's 28. We don't have good

> medical support for him (a mito doc) but we've discussed it a lot,

> and feel it's time for him to try the mito cocktail. What I'm

> looking for is specifics. Where is the best place to order from?

> Best quality for lowest price? Should I get the combo of Q10 with L

> Carnitine? Any tips on where to get Carnitor? My research has

> caused me to make an educated guess of starting at 100mg and go up

> from there. He weighs 210lbs - not sure what that is in kg. Thank

> you so much for any help you can provide. I'm getting confused by

> all my research and shopping around.

>

> Thank you!

>

> Amy

>

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March 31, 2004

Amy

Please talk to a doctor before going deeply into the mito cocktail. I take

many things, but they have been added one at a time and increased very

slowly. Carnitor is a prescription medication and it works in tandom with

the CoQ10 - one helping the other to work better. I do not start or increase

a supplement without talking to my MDA doctor or mito specialist. They are

both very knowledgeable about supplements. Whoever made the diagnosis might

be the one to start with. I have to take large amounts of supplements to

have a positive effect. I also take prescription meds to address some of the

issues caused by mito. I did not see any real improvement with the

supplements (so I thought), but realized when taken off of them for a biopsy

that they were helping to keep my condition more stable and couldn't wait to

get back on them. We are all different (even within the same family) and

have different symptoms and respond differently to different prescriptions

and supplements.

laurie

>

> Reply-To:

> Date: Thu, 01 Apr 2004 03:12:38 -0000

> To:

> Subject: Q10 / Cocktail