OK, what does not medical advice really MEAN??

[Guest guest]

{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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[Guest guest]

In a message dated 12/28/01 3:21:24 PM Eastern Standard Time,

vmpaf@... writes:

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

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

>

>

My experience is that the reason AF can be so difficult to deal with is that

it requires, on the one hand, very specialized knowledge (which

electrophysiologists have) and very general knowledge about how the body

works (which only very good GPs have). It really requires a team effort.

Since doctors tend not to collaborate (except in serious cases), the patient

must be the go-between, coordinating the advice received from both doctors.

That is how I dealt with it. First, I fired my cardiologist because he did

not know enough about AF (although he was probably fine as a general

cardiologist, but I didn't need a general cardiologist since my heart seems

to be fine absent the AF). I went to see an electrophysiologist instead.

Second, I involved my GP, and actually I got most of the advice on how to

deal with this from him. But most patients are not inclined to take such an

active role. And where the patient does not, the matter tends to be dealt

with by a doctor who does not have all the relevant information (whether it

is a GP, a cardiologist, or a specialist). That doctor will almost

invariably not do the best possible job. Moreover, since this is not a

life-threatening condition and most people can get by, it tends not to be

something that patients direct all their energy to as they would if they had

cancer for example.