Re: OK, what does not medical advice really MEAN??

[Guest guest]

In a message dated 12/28/2001 12:21:18 PM Pacific Standard Time,

vmpaf@... writes:

> This both pleases me and makes me nervous -

> pleased that I was maybe able to provide someone with the information on

> which to make a better informed decision

Yes, Vicky, without your site and and the

others and this list.....many of us would not know

there are other possibilities. The real danger is just

having only the doctor telling us things, like he is God.....

they usually only have one point of view and do not have

an open mind to anything else.

My two short experiences with beta blockers were bad

enough that I was stopping them no matter what......

the first time, I confirmed the next day through searches

on here that I should not have had it in the first place.....

and then my doctor said Vagal afib was just a theory...

idiot.....

I just hope everyone knows to be very careful when

stopping anything like that...... when I stopped both

of mine I had the bottles handy in case I had some

side effect..... especially when I stopped sotalol after

just 2 and a half days.... took me 3 or 4 days to get

over strange side effects. (it does work for some though).

Thank you so much for the help and information.

Best wishes,

Bill Utterback

South San Francisco, CA

[Guest guest]

Hi Vicky

Please don't think that I have stopped because of your vagal A fib

site info. I have been toying with the idea for over a year. And

weaning myslef down slowly (very slowly). I have not just stopped. I

have not done it lightly and my Dr knows I am doing it.

In my case I have hypotension so the blood pressure lowering effects

of beta blockers are not needed (and actually make it lower). I have

no structural abnormalities. Also my AF is supposedly not life

threatening, meaning that according to my Dr I am not at risk from

stroke. I will however continue to take asprin. He said he would

prefer me to be on a beta blocker, but can understand why I want to

stop. HE knows of many people with AF who will not take them because

of their side effects. I have thought long and hard about it after

discussing it with my GP. In my case, taking the beta blocker is just

trading one set of symptoms for a worse set of symptoms. This is not

the case for everyone. I seem to have multiple chemical sensitivity

and find it hard to tollerate many things, including plasters, soaps,

toothpaste etc. However, if they offered me the chance of ablation I

might jump at it. I think it is down to quality of life with me.

I know where you are coming from though. I would worry if someone did

something because I advocated it for particular reasons. Personally I

don't think people stop taking medication without going through the

pro's and cons. I have made sure I am as informed as possible of my

own condition. The way I see it is that if it does get bad I can

start again. But I need this break to find out what is caused by AF

etc and what is caused by side effects.

Fran

> {rant mode warning ;-) }

>

> I've just seen yet another posting saying that someone has

carefully

> taken themselves off a beta blocker, based on the information on my

web

> page about vagal AF. This both pleases me and makes me nervous -

> pleased that I was maybe able to provide someone with the

information on

> which to make a better informed decision (and I've seen a steady

trickle

> of these over the years), but nervous, as so rightly points

out

> does occur, that I as well as many others suffer from

> " knowing-little-itis " i.e. the state of knowing a little being a

> dangerous thing. I just hope that no-one has decided to see what

> happens if they take themselves off a medicine based on my site and

> things got worse, especially dangerously so.

>

> I will always keep the disclaimer that the site provides

information,

> not a means to self-diagnosis and self-treatment.

>

> But then there's a little voice at the back of my head

saying, " yes, but

> you are putting out this information because it's not you who knows

> little and is causing yourself a danger, but, for goodness sake,

some of

> (and hopefully a minority of) the medical professionals who are

supposed

> to be the ones who know, but clearly don't !!! " The

> beta-blocker-is-bad-for-vagal-AF is solid information from proper

> peer-reviewed medical papers, also it is basic medical science.

But

> also, there is Hans Larsen's survey data, and others, that suggest

that

> Digoxin does not help, and can actually make things worse by being

worse

> for vagal AF, not helping adrenergic AF, and possibly by converting

> paroxysmal AF to a persistent or permanent form.

>

> - What other unknowns are being perpetrated on we fibbers??

> - How much worsening of all our AF is iatrogenic??

> - And what should " this is not medical advice " be replaced by ??!!

>

> The Brits here may know the book/magazine series " What Doctors

Don't

> Tell You " (WDDTY). I'll start one called " WDCTYBTDKIT " (What

Doctors

> Can't Tell You Because They Don't Know It Themselves)

>

> Of course, there ARE a great many *good* doctors out there and we

can

> all be thankful for their knowledge and expertise. Maybe they can

help

> us and their colleagues along the road of greater education about

AF.

> Also there are a good many Doctors who are good doctors but who may

not

> be up to date with the latest AF wisdom, for reasons of complexity

and

> specialisation of the subject, etc etc.

>

> Maybe AF is the sort of condition that tends to separate the good

from

> the not-so-good rather more than better-understood conditions.

>

> {unrant}

>

>

> Best of health to all,

> Vicky

>

> London, UK, 1954 model

> http://www.vagalafibportal.fsnet.co.uk/

>

> " It is the theory that decides what can be observed "

> - Albert Einstein

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