The more inforamtion the better

[Guest guest]

Hi all, I absolutely agree! - Just because someone says something has

worked for them on this list doesn't mean everyone is going to run out and

do it - hopefully everyone will take the information and apply it to their

own situation - the more information we get from others the better - One

never knows where that road may lead us. One problem alot of us have had

with docs is not getting info - so I would hate to see people reluctanct to

post things that have helped them.

H

--- Original Message -----

To: <Mitoonelist>

Sent: Monday, March 13, 2000 10:37 PM

Subject: Re: Digest Number 477

>

>

> >This disease is so VARIABLE, that

> > virtually NO ONE has the exact same needs, even within the same families

> (I

> > won't bother to get into the reasons why). This is one reason why some

> > individuals are trying to point out that you really MUST be careful with

> what

> > you say.

> >

>

> I think that we have to count on ourselves to be able to filter

information,

> though Cheri. There used to be a list that made people " talk down " to

> families with mito, because they couldn't understand things and just might

> try something that didn't help, but hurt. That's so true, but if people

> don't offer what has worked, and YES even in Polly's case where there is

no

> mito diagnosis, we'll never know what =might= work. Whether or not a

child

> also has PEarson's or MELAS may affect what you use (as a parent you

should

> know), but patients with either could (and have) also have yeast

infections

> and other things that might be improved with treatments suggested. I know

> that many here have thyroid complications and for one, I am interested in

> how the thyroid hormones are processed since our defect may be impacting

it.

>

> I would encourage people to research research research, and be careful how

> you proceed, but never never never stop telling others what has worked.

> Others need to be careful how =they=act= on what you say, certainly we

want

> everyone to feel free to say whatever they think might make a difference.

>

> Other lists in the past have accused someone with good information of

being

> " too intelligent " or " talking over other';s heads " or " practising medicine

> without a license " . I think this is good sharing.

>

> JMHO

> Kathy

>

>

>

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>