Re: Re: Q10 and Carnitine blood tests

May 20, 2005

Maggie

I think it is probably the lab you are dealing with. I always go to

our local hospital for blood work. They are willing to go the extra

mile. They have the actual lab people who can make sense out of the

request, as the satlette labs are really drawing stations and the

people are only pholbotamists (sp?).

I hope you can find a lab that provide you with your tests without all

the hasstle.

laurie

> I'm not sure what's written in the MDA booklet, but I know how

> difficult it was for me to get the local lab to co-operate to order

> my CoQ10 test. What a project for something that just shouldn't

> have been that difficult. (I had been told by my metabolic doc's

> office that I could have the blood drawn locally and the local lab

> just needed to call the actual testing lab for instructions.)

>

> My local doc offered to have her office draw the blood and send it

> to the metabolic clinic (the nurse later refused and told me the DOC

> isn't the one who actually draws the blood and she didn't care what

> I was promised, I needed to go to someplace like Quest Labs). I did

> just that and unfortunately I was recognized by one of the employees

> as I had been there before with unsual lab requests. She

> immediately told me that they were too busy to be doing anything out

> of the ordinary (they had three people in the waiting room).

>

> I kindly insisted they COULD do this and I wasn't in a hurry. I'd go

> away and come back when they had the time to make the phone call.

> The next day I got a call that they had figured it out. They

> actually sent the blood to a different lab than what I told them (no

> idea how that could have happened and why they didn't just call the

> phone number I GAVE them) but it leaves me wondering how other

> people manage. I assume it's a lot easier when you have everything

> done through an MDA clinic. Or when you're AT the actual facility

> where they run the tests.

>

> Maggie

>

> > > Thanks for the replies. I was at my blood lab yesterday for

> > another

> > > test, and asked about getting tested there. The guy had no idea

> > what I

> > > was talking about. Fortunately, or maybe unfortunately, I'm

> > getting

> > > kind of used to that sort of response.

> > >

> > > I made an appointment at my local MDA clinic. They should know

> > what to

> > > do.

> > >

> > > There is info at Epic about Q10 blood levels.

> > >

> > > B

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

May 21, 2005

Steve

You might want to call MDA and make this suggestion or at an MDA

clinic. If enough of us were to make the request, then maybe they

would consider it. I agree that something with adults in mind is

needed as many doctors we see think of it as affecting children only.

I think the reason tests and amounts of supplements aren't given is

that this is an information booklet only. If it listed all the

specifics, then knowledgeable doctor's opinion would not be needed and

there would be people demanding testing and taking the large doses of

supplements without having anything near a diagnosis. Just my opinion.

By the way, I use the booklet " Think Mito " put out by the UMDF to hand

out to doctors. It has an article on adults with mito and does get

into more specifics in some of the other articles. It does cost $3.00,

but I have found it to be very worth the money in helping the many

specialsits I see for the problems that many of us have as a result of

mito.

laurie

> I've just re-examined the MDA booklet on mito. BTW even though the MDA site

> has online ordering of their various booklets, they ask that you limit

> yourselves to one of each. I called their publications phone munber about

> this, explained that I hand these out now and then, and the nice lady

> immediately sent me a free supply of about 30.

>

> Under " treatment " , the MDA mito booklet first talks generally of some

> symptoms like stroke, seizures, etc. and says there are " highly effective

> treatments (including medications, dietary modifications, and lifestyle

> changes) " but then adds VERY little detail. They do cite creatine,

> carnitine, and coQ10, but ony as supplements. Later on, they mention DCA

> for

> lactic acidosis.

>

> Under " diagnosis " , the MDA mito booklet starts with physical examination.

> In

> their la-la world, a physician would then supposedly note multiple symptoms

> that " strongly point " to mito, order tests of stength and endurance, put

> two and two together and next order a muscle biopsy (looking for RRF)!!!

> Other choices at this point would be MRS tuned for phosphocreatine and ATP,

> and CT and MRI to visualize muscle structure. There is of course no mention

> of the likely coertion that will be needed before doctors actually order

> these expensive tests. Then finally the booklet cites blood tests, but they

> only list lactate/pyruvate (with no mention of incorporating exercise) and

> CK. Finally they cite genetic tests looking for mutations in blood and

> muscle.

>

> That's it. It's perhaps unfair to characterize this introductory booklet as

> lame. But I certainly wouldn't consider it any kind of resource or guidance

> for doctors ordering tests.

>

> Steve D.

>

> P.S. I know that many children get mito, but I sure wish there was a

> version

> of this booklet that didn't HEAVILY picture kids. An adult version would

> GREATLY improve my credibility when I hand out this booklet.

>

> > Date: Fri, 20 May 2005 04:26:49 -0000

> >

> > Subject: Re: Q10 and Carnitine blood tests

> >

> > I'm not sure what's written in the MDA booklet, but I know how

> > difficult it was for me to get the local lab to co-operate to order

> > my CoQ10 test. What a project for something that just shouldn't

> > have been that difficult. (I had been told by my metabolic doc's

> > office that I could have the blood drawn locally and the local lab

> > just needed to call the actual testing lab for instructions.)

> >

> > My local doc offered to have her office draw the blood and send it

> > to the metabolic clinic (the nurse later refused and told me the DOC

> > isn't the one who actually draws the blood and she didn't care what

> > I was promised, I needed to go to someplace like Quest Labs). I did

> > just that and unfortunately I was recognized by one of the employees

> > as I had been there before with unsual lab requests. She

> > immediately told me that they were too busy to be doing anything out

> > of the ordinary (they had three people in the waiting room).

> >

> > I kindly insisted they COULD do this and I wasn't in a hurry. I'd go

> > away and come back when they had the time to make the phone call.

> > The next day I got a call that they had figured it out. They

> > actually sent the blood to a different lab than what I told them (no

> > idea how that could have happened and why they didn't just call the

> > phone number I GAVE them) but it leaves me wondering how other

> > people manage. I assume it's a lot easier when you have everything

> > done through an MDA clinic. Or when you're AT the actual facility

> > where they run the tests.

> >

> > Maggie

> >

> > > > Thanks for the replies. I was at my blood lab yesterday for

> > > another

> > > > test, and asked about getting tested there. The guy had no idea

> > > what I

> > > > was talking about. Fortunately, or maybe unfortunately, I'm

> > > getting

> > > > kind of used to that sort of response.

> > > >

> > > > I made an appointment at my local MDA clinic. They should know

> > > what to

> > > > do.

> > > >

> > > > There is info at Epic about Q10 blood levels.

> > > >

> > > > B

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

May 21, 2005

I agree, Laurie. I also use " Think Mitochondria " from UMDF. It's 63 pages

and contains 9 articles on various aspects of mitochondrial disease, all

written by experts. Usually, I give the whole booklet only to my regular

physicians, not because of cost but because it requires a sizeable

investment of their time---which doesn't seem reasonable to expect from

someone who rarely sees me. In fact, even when I give it to my reg docs, I

just say this is for your reference and never directly ask them to read it.

Physicians have so many demands on their time that I don't feel like I can

ask for extra hours. This is something they have to offer on their own, and

quite honestly, when I approach them this way, they are more likely to be

generous. Also I find that for anesthesiologists or the occasional consult,

it's better to hand them a copy of one specific article from the booklet

that relates to the issue at hand, rather than overwhelming them with the

whole schmear. They're much more likely to read the short article and may

just ignore the whole booklet. Some doctors don't like it when patients hand

them material to read, so I try to give them only what they really need. If

they express an interest, then I can offer more. I think the MDA pamphlets

serve to raise general awareness of mito but may tend to perpetuate certain

mito stereotypes. To give them credit, it would be difficult to write a

short pamphlet that isn't simplistic when the subject is so complex. Just my

2 cents.

Barbara

_____

From: [mailto: ] On Behalf

Of Laurie Fitzgerald

Sent: Saturday, May 21, 2005 6:50 AM

To:

Subject: Re: Re: Q10 and Carnitine blood tests