Re: Re: mito diagnosis and treatment

[Guest guest]

Steve, just to chime in on regulation of supplements. I too wish there could

be some accountability for the content of supplements, if nothing else just

to verify contents match amounts claimed on the label. Studies have

repeatedly shown that many OTC supplements do not contain amounts claimed,

or are in a form that cannot be utilized by humans..Oh, the irony of it all!

Barbara

_____

From: [mailto: ] On Behalf

Of Steve

Sent: Monday, May 23, 2005 5:34 AM

To:

Subject: Re: mito diagnosis and treatment

Laurie

Fair enough, and I'm happy for you or anyone when they eventually do get a

good diagnosis. I guess I'll go ahead then and respectfully ask the $64,000

question: in all those 15 years, did YOU ever suspect a mito or other

diagnosis and especially, did you therefore ever take a supplement ON YOUR

OWN?

'Cause I sure did, and continue to do so, and I will until some

" knowledgeable doctor " pries my CoQ10 and acetyl-L-carnitine bottles from my

(hopefully not dying) hands " . :-)

Point well taken, about finding a doc willing to learn about mito. Whether

they are researching on their own, or reading my handouts, I am slowly but

surely working on my own circle of docs.

And by the way, whether the MDA publishes guidelines for supplements and

dosage ranges, nonetheless the drug companies, supplement sales websites,

and so-called independent " health " websites, will all be doing their best to

convince many to self-medicate (YES IT'S TRUE, the government doesn't want

us to know about this new OTC that MELTS AWAY FAT for those who are too busy

to exercise!!! ). We each must strive to be as discerning and careful about

all these claims as we can. I only wish the FDA would regulate the actual

CONTENTS of these supplements, so that they at least contain what they claim

to contain. And maybe they could better police at least some of the more

outlandish or unsafe claims (a la ephedra), but perhaps that's expecting too

much.

Steve

> Date: Sun, 22 May 2005 22:19:20 -0500

>

> Subject: mito diagnosis and treatment

>

> Steve

>

> It took me 15 years for a diagnosis and MDA is the one who helped me

> get there and my doc has learned almost as much as the " mito docs " . I

> guess my experience has been different than many on this list. I do

> remember the frustration of being referred from one doc to another and

> never being believed.

>

> laurie

>

>

> > Laurie

> >

> > I do appreciate your point that the MDA booklet is only introductory.

> >

> > However, you say " 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 " . In my humble opinion: (a) there appear to be

> > approximately 12 doctors in the world that are sufficiently

knowledgeable

> > to

> > not need any REAL primer and ( all the REST of the doctors NEED

(whether

> > they will admit it or not) concise but thorough guidance, from a booklet

> > and/or a knowledgeable patient.

> >

> > While it's true that some people will take large-dose supplements based

on

> > misguided self-diagnosis, it's also true that many of us in this email

> > group

> > have experienced vastly delayed diagnosis, in many cases due to clueless

> > but

> > self-inflated doctors, rude or incompetent staff, and overly frugal

HMOs.

> > This means that many of us have no choice but to be heavily involved in

the

> > whole process of diagnosis and treatment, and each of us must find their

> > common-sense way through a forbidding terrain of confusion and

obfuscation.

> > I for one am very happy to understand that we are only sharing

information,

> > some of it very hard-earned, and that some of us are more qualified and

> > careful than others.

> >

> > So I guess I've heard too many stories (including my own) where even the

> > MDA

> > clinics are woefully ill-informed about mito (one of their 40-odd

> > diseases),

> > and at the same time I am VERY impressed by the depth of information

> > available to anyone who wants to look, on the UMDF site. MDA is

well-known

> > and has much more funding for patient needs, but is a little lame (in

the

> > specifics on mito) in their online info and even at times in clinical

> > treatment. UMDF is a super resource, but I guess they're mostly into

> > awareness

> > and research. At least they're not afraid to publish their thorough

> > information

> > on diagnostics and treatment regimes (naming supplements and typical

dosage

> > ranges).

> >

> > I say all the above only in the spirit of my respectfully adding to the

> > debate. I do also understand that at least some people have had

successful

> > treatment from MDA.

> >

> > Back to the original thread about details of diagnostic and ongoing

> > testing,

> > esp.

> > re CoQ10 and carnitine,

> > http://www.umdf.org/physicianarea/evaluation.html is fantastic on this

> > subject.

> > There's also great info at

> > http://www.umdf.org/resources/index.asp ,

> > http://www.umdf.org | Information Center | For Patients and Families |

> > Diagnostic Testing, and

> > http://www.umdf.org | Information Center | For Patients and Families |

> > Treatment

> >

> > Regards

> > Steve

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.

_____

[Guest guest]

Steve

For the 64,000 dollar question. During most of those 15 years I just

knew something was wrong, but didn't even know that mito existed. My

sister ( on the list) was having similar problems during the

later part of this period. Together, we came up with some info on mito

and went to our MDA doc and asked him. He knew enough to say it might

be, but he didn't know how to get it diagnosed. We then were able to

tell him about Dr. Shoffner and he spent a year with us trying to get

everything set up for our trip to Atlanta so I could have a fresh

biopsy.

I agree that taking some supplements are generally a good thing. I

would never have taken 1000 mg. of Q-gel on my own. It was my MDA doc

who was familar with the Parkinson's research which showed that under

this amount was not effective. The mito docs are gradually changing

their position on the dosage as well.

My MDA neuro had already put us on Carnitor based on this knowledge

and our lab results. We were slightly low in carnitine. Our MDA neuro

added Zinc to our list from information he had gained.

I have added some supplements not recommended, but okayed by my docs.

These are things like garlic.

laurie

> Laurie

>

> Fair enough, and I'm happy for you or anyone when they eventually do get a

> good diagnosis. I guess I'll go ahead then and respectfully ask the $64,000

> question: in all those 15 years, did YOU ever suspect a mito or other

> diagnosis and especially, did you therefore ever take a supplement ON YOUR

> OWN?

>

> 'Cause I sure did, and continue to do so, and I will until some

> " knowledgeable doctor " pries my CoQ10 and acetyl-L-carnitine bottles from

> my

> (hopefully not dying) hands " . :-)

>

> Point well taken, about finding a doc willing to learn about mito. Whether

> they are researching on their own, or reading my handouts, I am slowly but

> surely working on my own circle of docs.

>

> And by the way, whether the MDA publishes guidelines for supplements and

> dosage ranges, nonetheless the drug companies, supplement sales websites,

> and so-called independent " health " websites, will all be doing their best

> to

> convince many to self-medicate (YES IT'S TRUE, the government doesn't want

> us to know about this new OTC that MELTS AWAY FAT for those who are too

> busy

> to exercise!!! ). We each must strive to be as discerning and careful about

> all these claims as we can. I only wish the FDA would regulate the actual

> CONTENTS of these supplements, so that they at least contain what they

> claim

> to contain. And maybe they could better police at least some of the more

> outlandish or unsafe claims (a la ephedra), but perhaps that's expecting

> too

> much.

>

> Steve

>

> > Date: Sun, 22 May 2005 22:19:20 -0500

> >

> > Subject: mito diagnosis and treatment

> >

> > Steve

> >

> > It took me 15 years for a diagnosis and MDA is the one who helped me

> > get there and my doc has learned almost as much as the " mito docs " . I

> > guess my experience has been different than many on this list. I do

> > remember the frustration of being referred from one doc to another and

> > never being believed.

> >

> > laurie

> >

> >

> > > Laurie

> > >

> > > I do appreciate your point that the MDA booklet is only introductory.

> > >

> > > However, you say " 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 " . In my humble opinion: (a) there appear to be

> > > approximately 12 doctors in the world that are sufficiently

> knowledgeable

> > > to

> > > not need any REAL primer and ( all the REST of the doctors NEED

> (whether

> > > they will admit it or not) concise but thorough guidance, from a

> booklet

> > > and/or a knowledgeable patient.

> > >

> > > While it's true that some people will take large-dose supplements based

> on

> > > misguided self-diagnosis, it's also true that many of us in this email

> > > group

> > > have experienced vastly delayed diagnosis, in many cases due to

> clueless

> > > but

> > > self-inflated doctors, rude or incompetent staff, and overly frugal

> HMOs.

> > > This means that many of us have no choice but to be heavily involved in

> the

> > > whole process of diagnosis and treatment, and each of us must find

> their

> > > common-sense way through a forbidding terrain of confusion and

> obfuscation.

> > > I for one am very happy to understand that we are only sharing

> information,

> > > some of it very hard-earned, and that some of us are more qualified and

> > > careful than others.

> > >

> > > So I guess I've heard too many stories (including my own) where even

> the

> > > MDA

> > > clinics are woefully ill-informed about mito (one of their 40-odd

> > > diseases),

> > > and at the same time I am VERY impressed by the depth of information

> > > available to anyone who wants to look, on the UMDF site. MDA is

> well-known

> > > and has much more funding for patient needs, but is a little lame (in

> the

> > > specifics on mito) in their online info and even at times in clinical

> > > treatment. UMDF is a super resource, but I guess they're mostly into

> > > awareness

> > > and research. At least they're not afraid to publish their thorough

> > > information

> > > on diagnostics and treatment regimes (naming supplements and typical

> dosage

> > > ranges).

> > >

> > > I say all the above only in the spirit of my respectfully adding to the

> > > debate. I do also understand that at least some people have had

> successful

> > > treatment from MDA.

> > >

> > > Back to the original thread about details of diagnostic and ongoing

> > > testing,

> > > esp.

> > > re CoQ10 and carnitine,

> > > http://www.umdf.org/physicianarea/evaluation.html is fantastic on this

> > > subject.

> > > There's also great info at

> > > http://www.umdf.org/resources/index.asp ,

> > > http://www.umdf.org | Information Center | For Patients and Families |

> > > Diagnostic Testing, and

> > > http://www.umdf.org | Information Center | For Patients and Families |

> > > Treatment

> > >

> > > Regards

> > > Steve

>

>

>

> 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.

>

>