Re: Triggers , was: Amalgam removal, etc.

[Guest guest]

on Sun, 7 Apr 2002 at 11:29:42, Driscoll

wrote :

>alcohol is not a problem for me -

It's that Newcastle Brown, - hasn't got any alcohol in it - it's

still all sugar ;-)

(Brit joke, sorry)

Best of health to all,

Vicky

London, UK, 1954 model

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

" You can convert some of the people some of the time,

but you can't convert all of the people all of the time "

--------------------------------------------------------------------------------\

-------------

[Guest guest]

--Well said. I agree that people of a given type of afib may respond

to different triggers, and we want to avoid pigeon-holing such. However,

statistically, I'm interested in what works for people, given their type of

afib, without trying to " classify " remedies.

For example, when I'm having arrhythmias during the day, all I need to do to

" reset " my heart is go for an easy 1-3 mile run, usually in the late

afternoon or early evening. I'm not saying that will work for everyone, or

even for all those who have my type of afib, but I think it would be helpful

to relate to everyone, in describing my remedy, that I have vagal afib, and

this remedy works for me, in case they want to try the same.

--Tim R.

Triggers , was: Amalgam removal, etc.

<< Hi all

As each of you discuss various triggers, remedies, and side effects of

various stimuli and meds, etc, it would be great if you could also mention

whether you are primarily adrenergic or vagal (if you know). From my

understanding, such stimuli and meds, etc, can have a different, maybe

even

opposite, effect if you have the opposite type of afib.

Thanks,

Tim R.>>

Hi Tim, an excellent suggestion but I think you'll discover many

contradictions.

For example, my AF is vagally triggered and alcohol is not a problem for

me -

in fact it can delay the onset of AF for about 24 hours. I know there a

many

vagal AFers that find alcohol a problem.

I think also that there are many examples of triggers that put people in

AF

being triggers that get people out of it. In my case a large meal at the

wrong

time can put me into AF but a large meal 18 hours into AF will often bring

me

out of AF too. It would be great if we could split these triggers into

vagal

and adrenergic but I'm not sure we can. There certainly may be a subset of

the

triggers that just fit in one group so I still recommend people include

their

AF type in posts.

One of the problems is that we try to put ourselves in either the vagal or

adrenergic pigeon hole. I suspect some should put themselves in a " low

body

temp " pigeon hole and others put themselves in a " fibrous tissue in the

heart "

hole and the chances that we fit neatly into any one category, I think,

are

slim.

All the best

--

D (33, Leeds, UK)

vagal AF for 24 hours every 16 days

[Guest guest]

> --Well said. I agree that people of a given type of afib may

respond

> to different triggers, and we want to avoid pigeon-holing such.

However,

> statistically, I'm interested in what works for people, given their

type of

> afib, without trying to " classify " remedies.

>

> For example, when I'm having arrhythmias during the day, all I need

to do to

> " reset " my heart is go for an easy 1-3 mile run, usually in the late

> afternoon or early evening. I'm not saying that will work for

everyone, or

> even for all those who have my type of afib, but I think it would be

helpful

> to relate to everyone, in describing my remedy, that I have vagal

afib, and

> this remedy works for me, in case they want to try the same.

>

> --Tim R.

>

> Triggers , was: Amalgam removal, etc.

>

>

> << Hi all

> As each of you discuss various triggers, remedies, and side

effects of

> various stimuli and meds, etc, it would be great if you could also

mention

> whether you are primarily adrenergic or vagal (if you know). From

my

> understanding, such stimuli and meds, etc, can have a different,

maybe

> even

> opposite, effect if you have the opposite type of afib.

>

> Thanks,

>

> Tim R.>>

>

> Hi Tim, an excellent suggestion but I think you'll discover many

> contradictions.

> For example, my AF is vagally triggered and alcohol is not a

problem for

> me -

> in fact it can delay the onset of AF for about 24 hours. I know

there a

> many

> vagal AFers that find alcohol a problem.

>

> I think also that there are many examples of triggers that put

people in

> AF

> being triggers that get people out of it. In my case a large meal

at the

> wrong

> time can put me into AF but a large meal 18 hours into AF will

often bring

> me

> out of AF too. It would be great if we could split these triggers

into

> vagal

> and adrenergic but I'm not sure we can. There certainly may be a

subset of

> the

> triggers that just fit in one group so I still recommend people

include

> their

> AF type in posts.

>

> One of the problems is that we try to put ourselves in either the

vagal or

> adrenergic pigeon hole. I suspect some should put themselves in a

" low

> body

> temp " pigeon hole and others put themselves in a " fibrous tissue

in the

> heart "

> hole and the chances that we fit neatly into any one category, I

think,

> are

> slim.

>

> All the best

> --

> D (33, Leeds, UK)

> vagal AF for 24 hours every 16 days

, of the " vagal AF for 24 hours every 16 days " pigeon-hole, I

have to ask: Have YOU tried, by compliments, cajoling, threats,

promises of " a good time " , whatever, to get a doc to " poke and prod "

you right through the cycle of AF, from the time you go into it, until

you self-terminate? I refuse to believe, as my cardio insisted in

response to a similar request from me, that the " tests are far too

unreliable to determine anything definitive with respect to minute but

identifiable changes in urine specs, blood electrolytes, esp.

intracellular magnesium, etc. "

I agree with the others here who have stated some reservations

about Steve's challenge to the powers-that-be, in spite of his

remarkably spunky defense, and yet I sympathize with his position,

because I have personal experience that leads me to believe the stats

about how long it takes a " different " idea to be considered in the

medical community.

Lawrence

>

>

>

[Guest guest]

To all:

Once again. Probably our *BIGGEST* barrier is our present two-hole

classification of afib. From what I can tell, there are at least a

dozen subtypes. If someone (Hans Larsen has the best data) would just

do the cluster analysis that will identify these subtypes, then we

could truly begin to help each other.

Now, without this classification methodology, everyone relates their

experiences, but no one knows whether it is applicable to them.

I certainly discovered this with my former afib. I found that liquid

gensing extract would stop most of my attacks in less than a minute.

What I didn't know was that at most 5% of our members have the same

sort of afib as I did. Similarly, I was barraged with peoples

experiences, most of which simply didn't apply to me, nor to most of

our readers.

I understand my particular, somewhat unusual subtype, and have fairly

good reason to believe that others with my particular subtype could be

cured the same way I was. Hence, this subclassification should

immediately result in curing around 5% of our members.

Others have also found their cures, but until this subclassification

is done, this incredibly valuable information cannot be transferred to

those who so desperately need it.

This is THE highest priority task for this group to undertake.

Steve

=================

> > --Well said. I agree that people of a given type of afib may

> respond

> > to different triggers, and we want to avoid pigeon-holing such.

> However,

> > statistically, I'm interested in what works for people, given

their

> type of

> > afib, without trying to " classify " remedies.

> >

> > For example, when I'm having arrhythmias during the day, all I

need

> to do to

> > " reset " my heart is go for an easy 1-3 mile run, usually in the

late

> > afternoon or early evening. I'm not saying that will work for

> everyone, or

> > even for all those who have my type of afib, but I think it would

be

> helpful

> > to relate to everyone, in describing my remedy, that I have vagal

> afib, and

> > this remedy works for me, in case they want to try the same.

> >

> > --Tim R.

> >

> > Triggers , was: Amalgam removal, etc.

> >

> >

> > << Hi all

> > As each of you discuss various triggers, remedies, and side

> effects of

> > various stimuli and meds, etc, it would be great if you could

also

> mention

> > whether you are primarily adrenergic or vagal (if you know).

From

> my

> > understanding, such stimuli and meds, etc, can have a different,

> maybe

> > even

> > opposite, effect if you have the opposite type of afib.

> >

> > Thanks,

> >

> > Tim R.>>

> >

> > Hi Tim, an excellent suggestion but I think you'll discover many

> > contradictions.

> > For example, my AF is vagally triggered and alcohol is not a

> problem for

> > me -

> > in fact it can delay the onset of AF for about 24 hours. I know

> there a

> > many

> > vagal AFers that find alcohol a problem.

> >

> > I think also that there are many examples of triggers that put

> people in

> > AF

> > being triggers that get people out of it. In my case a large

meal

> at the

> > wrong

> > time can put me into AF but a large meal 18 hours into AF will

> often bring

> > me

> > out of AF too. It would be great if we could split these

triggers

> into

> > vagal

> > and adrenergic but I'm not sure we can. There certainly may be a

> subset of

> > the

> > triggers that just fit in one group so I still recommend people

> include

> > their

> > AF type in posts.

> >

> > One of the problems is that we try to put ourselves in either

the

> vagal or

> > adrenergic pigeon hole. I suspect some should put themselves in

a

> " low

> > body

> > temp " pigeon hole and others put themselves in a " fibrous tissue

> in the

> > heart "

> > hole and the chances that we fit neatly into any one category, I

> think,

> > are

> > slim.

> >

> > All the best

> > --

> > D (33, Leeds, UK)

> > vagal AF for 24 hours every 16 days

>

> , of the " vagal AF for 24 hours every 16 days " pigeon-hole, I

> have to ask: Have YOU tried, by compliments, cajoling, threats,

> promises of " a good time " , whatever, to get a doc to " poke and

prod "

> you right through the cycle of AF, from the time you go into it,

until

> you self-terminate? I refuse to believe, as my cardio insisted in

> response to a similar request from me, that the " tests are far too

> unreliable to determine anything definitive with respect to minute

but

> identifiable changes in urine specs, blood electrolytes, esp.

> intracellular magnesium, etc. "

>

> I agree with the others here who have stated some reservations

> about Steve's challenge to the powers-that-be, in spite of his

> remarkably spunky defense, and yet I sympathize with his position,

> because I have personal experience that leads me to believe the

stats

> about how long it takes a " different " idea to be considered in the

> medical community.

> Lawrence

> >

> >

> >

[Guest guest]

Lawrence wrote:

<<

, of the " vagal AF for 24 hours every 16 days " pigeon-hole, I

have to ask: Have YOU tried, by compliments, cajoling, threats,

promises of " a good time " , whatever, to get a doc to " poke and prod "

you right through the cycle of AF, from the time you go into it, until

you self-terminate? I refuse to believe, as my cardio insisted in

response to a similar request from me, that the " tests are far too

unreliable to determine anything definitive with respect to minute but

identifiable changes in urine specs, blood electrolytes, esp.

intracellular magnesium, etc. "

I agree with the others here who have stated some reservations

about Steve's challenge to the powers-that-be, in spite of his

remarkably spunky defense, and yet I sympathize with his position,

because I have personal experience that leads me to believe the stats

about how long it takes a " different " idea to be considered in the

medical community.

Lawrence>>

Hi Lawrence, yes very important to stick me in the " cyclical " pigeon hole

I first tried steering the testing when Victor T suggested the link with

magnesium. Although I couldn't talk my cardiologist into doing an

intracellular test (he said they didn't do them) he was happy to give me a

single blood serum test. It was after this point that I approached them with

the " test me daily " idea (as bad luck would have it I saw a different

cardiologist) - he said that there are literally 1000s of things they could

look for so the tests would be way too expensive. I took this as a bit of a

fob off since you surely make a list of the obvious culprits and look at them

first.

I reapproached them quite recently when the CRP article appeared as I thought

this was an ideal candidate for one thing to look for. (When I went to see

them my main cardiologist was on a course but I saw a new doctor who seemed to

understand what I was after but said she was unable to make such a decision

but would pass the info on to my Doc along with the journal references). I

recently received a letter from my cardiologist thanking me for the CRP

references and saying it was interesting but of no real surprise. The issue of

testing me wasn't brought up in the letter so either the message didn't get to

him or he doesn't see any point. (Something I still need to clarify)

So overall - not much success!

Another problem to all this testing is that not only do you have to come up

with a good list to look for but you have to measure at the right frequency.

CRP's half life is only 5-7 hours for example and at 100$ a time it's easy to

see why even with this single test the Docs are reluctant to take the plunge.

I assume electrolyte tests are somewhat cheaper though so coming up with a

useful list that is cheap to test might be my next attempt.

As an aside a very similar problem occurs for me with the holter monitor test.

In the uk they perform 24 four hour tests.

I think I've had about four of these but non have managed to catch me in or

near AF. They upped this to a 48 hours test but also failed to catch me in AF.

I know enough about my AF that if they could give me one for 6 days from a day

I specified I could catch an episode. It's the next thing I want to have a go

at arranging but I suspect extracting one out of the service when there is a

couple of months waiting list may be a problem - we shall see.

Of course even this may be too expensive - what I really want to do is grab it

for 6 days for five or six episodes to see if all me attacks start in a

similar way....

--

D (33, Leeds, UK)

vagal AF for 24 hours every 16 days

[Guest guest]

You do the analysis.

Create a poll. Put in your dozen or so subtypes, plus a few more

choices. Call them, none of the above and " other (post to group) " . We

vote. Instant cluster analysis.

http://groups.yahoo.com/group/AFIBsupport/polls

If you don't know the subtypes or you think they may be to incomplete

for a poll, create, using our database function, a database with fields

to populate that will give the info that would be helpful.

http://groups.yahoo.com/group/AFIBsupport/database

This would use the functions available to us on the group, and may yield

interesting information. You may already find some of the information in

' database at:

http://www.dialsolutions.com/af .

Using these methods, we can remain on topic, utilize the functions on

the group, and give all members an opportunity to participate.

And please take the proof and editing conversation to personal email.

That is not what this group is for.

http://groups.yahoo.com/group/AFIBsupport/

Bobby

Atlanta

Co-moderator

Electrical Engineer

Georgia Tech '83

Re: Triggers , was: Amalgam removal, etc.

To all:

Once again. Probably our *BIGGEST* barrier is our present two-hole

classification of afib. From what I can tell, there are at least a

dozen subtypes. If someone (Hans Larsen has the best data) would just

do the cluster analysis that will identify these subtypes, then we

could truly begin to help each other.

[Guest guest]

Amen!!

Ellen

69 NC

******************

(big snip) Using these methods, we can remain on topic, utilize the

functions on the group, and give all members an opportunity to

participate. And please take the proof and editing conversation to

personal email. That is not what this group is for.

Bobby

Atlanta

Co-moderator

Electrical Engineer

Georgia Tech '83

*******************

[Guest guest]

<<This would use the functions available to us on the group, and may yield

interesting information. You may already find some of the information in

' database at:

http://www.dialsolutions.com/af .>>

..... which you can down load as a csv file and play with as much as you like

(click on " Show all records " then click on " Save all these records as a CSV

file " to export everything or you can export any search result)

--

D (33, Leeds, UK)

vagal AF for 24 hours every 16 days

[Guest guest]

Bobby:

1. I created a poll to screen for metabolic control system programming

problems. Not perfect, but a place to start.

2. The polling system is inadequate to use for cluster analysis.

3. The AFIBsupport tables are an assortment of special-purpose tables

that are not usable for cluster analysis.

4. The dialsolutions table is the only one you listed that potentially

contains enough information for any sort of cluster analysis. In

approaching this, the REALLY IMPORTANT questions to categorize a

condition are how the condition acts WITHOUT medication. WITH

medication, it may (and probably does) act like an entirely different

sort of afib. Also, it would be nice to secure tables like this in

some sort of portable form, e.g. an .MDB file, so I can throw it into

ACCESS or EXCEL to do some serious analysis. Also, there are a LOT of

uncoded responses, which I would have to fix by hand. Hans' surveys

address some of these issues, and I have asked him for a cluster

analysis, but that hasn't been where his interest is.

5. My motivation to do a bunch more research on afib is limited, now

that I have cured my afib and am now working on curing my residual

adrenal fatigue and hypothyroidism, for which my prime suspect is

heavy metal poisoning. There are no single-cause diseases, and afib is

no exception. I made my posting to show others who might wish to

continue where I am leaving off the next steps to get past their own

problems.

6. So why do I darken your door now that I am " cured " ? Presuming that

I AM correct that afib is a multiple cause disease, there will be

others sooner or later who find the OTHER causes for me to fix in

myself. If I could just get everyone to take some temperatures and

answer the survey I posted, I would soon have my answer regarding just

how universal the control system problems are, which would help me

quantify just how significant the other causes are, though it still

won't tell me WHAT they are.

7. The discussion regarding my book went immediately off line, except

for a reply I made to a posting from another moderator. It was my

opinion that afib was in many cases not a medical problem, that the

doctors had so blown their responsibility that no one could be blamed

for taking matters in their own hands, that such a warning as proposed

had no legal significance whatsoever if challenged in court, and that

the whole discussion tended to discredit those (like me) who were

trying and discussing the nuts and bolts of alternative methods. In

that reply, I posted a warning to State Medical Boards to illustrate

another approach that I STILL think this group should consider.

Unfortunately, in so doing I found that I had beaten a hornets nest

and glutted the message board. Sorry about that.

8. From what I can tell, this group has had a total of 3 real success

stories during its entire lifetime - worse than expected from the

placebo effect, and worse than from Christian Science. It is important

not only to find the cures to afib, but also to find the cures to our

own organizational dysfunction. Telling someone who makes a suggestion

to " You do the analysis " when I am just trying to guide others who ARE

supposedly already doing the analysis and I am obviously already doing

a LOT of other things (some of which you are complaining about) is

counterproductive.

9. Contrast this group with WS-Forum, that was SO successful in

resetting people's temperatures back up to normal that its membership

drifted away because they were nearly all cured! They had an 85%

success rate before I ever heard of it, and my methods quickly fixed

all but one member, who had a very unusual problem. I am convinced

that success or failure in medicine is a paradigm issue. If you frame

a problem incorrectly, then you will NEVER EVER find a cure, and most

people on this forum, like those on alt.support.thyroid, have

voluntarily adopted a set of mental restrictions that will forever

block them until they drop their mental restrictions and allow

themselves to see their afib from its many diverse points of view,

e.g. why afib is a really good thing if you are stuck with the

problems that afib addresses. To illustrate, nearly everyone on

WS-Forum came there from alt.support.thyroid, and there is every

evidence that nearly all of the suffering thousands on

alt.support.thyroid, a MUCH larger group than ours, could be cured

almost overnight, just like the people on WS-Forum were. I agree with

many others that the applicability of my methods isn't as obvious here

as it is in 's Syndrome or Hypothyroidism cases, but until I get

a bunch of members to take their temps and comment on their bowel

habits and bloated tummies, neither of us will know for sure.

Steve

=================

> You do the analysis.

>

> Create a poll. Put in your dozen or so subtypes, plus a few more

> choices. Call them, none of the above and " other (post to group) " .

We

> vote. Instant cluster analysis.

> http://groups.yahoo.com/group/AFIBsupport/polls

>

>

> If you don't know the subtypes or you think they may be to

incomplete

> for a poll, create, using our database function, a database with

fields

> to populate that will give the info that would be helpful.

> http://groups.yahoo.com/group/AFIBsupport/database

>

> This would use the functions available to us on the group, and may

yield

> interesting information. You may already find some of the

information in

> ' database at:

> http://www.dialsolutions.com/af .

>

> Using these methods, we can remain on topic, utilize the functions

on

> the group, and give all members an opportunity to participate.

>

> And please take the proof and editing conversation to personal

email.

> That is not what this group is for.

> http://groups.yahoo.com/group/AFIBsupport/

>

>

> Bobby

> Atlanta

> Co-moderator

> Electrical Engineer

> Georgia Tech '83

>

>

>

> Re: Triggers , was: Amalgam removal, etc.

>

> To all:

>

> Once again. Probably our *BIGGEST* barrier is our present two-hole

> classification of afib. From what I can tell, there are at least a

> dozen subtypes. If someone (Hans Larsen has the best data) would

just

> do the cluster analysis that will identify these subtypes, then we

> could truly begin to help each other.

[Guest guest]

<<4. the REALLY IMPORTANT questions to categorize a

condition are how the condition acts WITHOUT medication. WITH

medication, it may (and probably does) act like an entirely different

sort of afib.>>

I agree that a lot of the useful information needs to be extracted when free

of drugs but this is a BIG problem if your symptoms are so bad that drug free

also means a hospital trip where there will start throwing drug into you.

<<Also, it would be nice to secure tables like this in

some sort of portable form, e.g. an .MDB file, so I can throw it into

ACCESS or EXCEL to do some serious analysis.>>

the database section allows you to export as CSV but the poll section seems to

be missing this trick.

<<Also, there are a LOT of uncoded responses, which I would have to fix by

hand. Hans' surveys address some of these issues, and I have asked him for a

cluster analysis, but that hasn't been where his interest is.>>

Ahh, the delights of analysing data it takes me around a week to do the

stats page for the database

(http://www.dialsolutions.com/af/database/stats161.html)

At some point I'd like to spend a week changing the thing so it works out more

of the stats automatically.

Tricky job automating a process that you want to be open and flexible.....

<<6. So why do I darken your door now that I am " cured " ? Presuming that

I AM correct that afib is a multiple cause disease, there will be

others sooner or later who find the OTHER causes for me to fix in

myself. If I could just get everyone to take some temperatures and

answer the survey I posted, I would soon have my answer regarding just

how universal the control system problems are, which would help me

quantify just how significant the other causes are, though it still

won't tell me WHAT they are.>>

Well you know what I think about taking temperatures - jumping to any

conclusion given inconsistent data you will get from the internet community

will be crazy in my opinion.

<<8. From what I can tell, this group has had a total of 3 real success

stories during its entire lifetime - worse than expected from the

placebo effect, and worse than from Christian Science. It is important

not only to find the cures to afib, but also to find the cures to our

own organizational dysfunction. Telling someone who makes a suggestion

to " You do the analysis " when I am just trying to guide others who ARE

supposedly already doing the analysis and I am obviously already doing

a LOT of other things (some of which you are complaining about) is

counterproductive.>>

if you take a look at the stats page I think it's a bit higher than this

out of 161 entries

5 cured

4 have episodes more than 1 year apart

7 have episodes longer than 6 months apart

I'd don't know if you've entered your details Steve so no number of cured

might be higher still

(It's also worth bearing in mind that the type of folk you are more likely to

see on the internet are the people having trouble. There may be many more out

there who are cured and never even thought about pursuing the problem on the

internet. We are certainly not representative of the whole AFib community)

All the best

--

D (33, Leeds, UK)

vagal AF for 24 hours every 16 days

[Guest guest]

:

4. Maybe the questions should read like: " If you weren't taking any

drugs, what do you think your ...(e.g. duration of attacks) be? " Sure

this is pretty subjective, but not nearly as bad for cluster analysis

as the present situation is.

6. The secret with " fuzzy " data is error recognizing/correcting

redundancy. Certainly, with all of its problems, temperature is a more

reliable indicator than, say, subject average duration of attacks

while taking some sort of medication. If you will look at the survey I

posted, I ask, for example, if someone's temperature is low, and in

another question I ask about bowel habits that will also be messed up,

albeit for other, consequential reasons. If someone has low body

temperature but reports normal bowel habits, then I would probably

discard them as an outlier (error detection) unless there were

several such people. Since there is SO much known about normal and

abnormal metabolic processes, no decision would hinge on a single

wrong answer. No, I wasn't as complete in this as I could have been,

because I was looking for a quick glimpse with enough redundancy to

satisfy even you. If the results are as plain as I hope they are,

people should be motivated to participate in a much more comprehensive

survey, that would have SO much redundancy that it would work through

several wrong answers (error correction).

In your surveys, you could also ask redundant questions, like how many

attacks per month, average length of an attack, and how many hours per

month in an attack. Some simple arithmetic will tell you if these are

all consistent (error detection).

8. My own standard, which I think is the same as used by the FDA, is

to be considered a " cure " requires that the condition be gone or

reduced to nil, WITHOUT needing any continuing medication, and without

leaving an ongoing problem in place, as the MAZE and ablation

procedures do by not addressing any of the associated symptoms. In my

own case, I skip an hour or so of " brain fog " with some espresso in

the morning, but this is not required either to eventually reach 98.6F

nor to eliminate my afib. Approximately what do your statistics look

like if you eliminate those who continue to take prescription

medication?

Steve

============

>

> <<4. the REALLY IMPORTANT questions to categorize a

> condition are how the condition acts WITHOUT medication. WITH

> medication, it may (and probably does) act like an entirely

different

> sort of afib.>>

>

> I agree that a lot of the useful information needs to be extracted

when free

> of drugs but this is a BIG problem if your symptoms are so bad that

drug free

> also means a hospital trip where there will start throwing drug into

you.

>

>

> <<Also, it would be nice to secure tables like this in

> some sort of portable form, e.g. an .MDB file, so I can throw it

into

> ACCESS or EXCEL to do some serious analysis.>>

>

> the database section allows you to export as CSV but the poll

section seems to

> be missing this trick.

>

>

> <<Also, there are a LOT of uncoded responses, which I would have to

fix by

> hand. Hans' surveys address some of these issues, and I have asked

him for a

> cluster analysis, but that hasn't been where his interest is.>>

>

> Ahh, the delights of analysing data it takes me around a week to

do the

> stats page for the database

> (http://www.dialsolutions.com/af/database/stats161.html)

> At some point I'd like to spend a week changing the thing so it

works out more

> of the stats automatically.

> Tricky job automating a process that you want to be open and

flexible.....

>

>

> <<6. So why do I darken your door now that I am " cured " ? Presuming

that

> I AM correct that afib is a multiple cause disease, there will be

> others sooner or later who find the OTHER causes for me to fix in

> myself. If I could just get everyone to take some temperatures and

> answer the survey I posted, I would soon have my answer regarding

just

> how universal the control system problems are, which would help me

> quantify just how significant the other causes are, though it still

> won't tell me WHAT they are.>>

>

> Well you know what I think about taking temperatures - jumping to

any

> conclusion given inconsistent data you will get from the internet

community

> will be crazy in my opinion.

>

>

>

> <<8. From what I can tell, this group has had a total of 3 real

success

> stories during its entire lifetime - worse than expected from the

> placebo effect, and worse than from Christian Science. It is

important

> not only to find the cures to afib, but also to find the cures to

our

> own organizational dysfunction. Telling someone who makes a

suggestion

> to " You do the analysis " when I am just trying to guide others who

ARE

> supposedly already doing the analysis and I am obviously already

doing

> a LOT of other things (some of which you are complaining about) is

> counterproductive.>>

>

> if you take a look at the stats page I think it's a bit higher than

this

> out of 161 entries

> 5 cured

> 4 have episodes more than 1 year apart

> 7 have episodes longer than 6 months apart

>

> I'd don't know if you've entered your details Steve so no number of

cured

> might be higher still

> (It's also worth bearing in mind that the type of folk you are more

likely to

> see on the internet are the people having trouble. There may be many

more out

> there who are cured and never even thought about pursuing the

problem on the

> internet. We are certainly not representative of the whole AFib

community)

>

> All the best

> --

> D (33, Leeds, UK)

> vagal AF for 24 hours every 16 days

[Guest guest]

Re: Triggers , was: Amalgam removal, etc.

> :

>

> 4. Maybe the questions should read like: " If you weren't taking any

> drugs, what do you think your ...(e.g. duration of attacks) be? " Sure

> this is pretty subjective, but not nearly as bad for cluster analysis

> as the present situation is.

I can answer this one, and it is not subjective. After 10 years on digoxin,

a few weeks on Arythmol, a year on Sotalol (yeauch), three days on

flecainide and a month or so on atenolol I had AF every day (Dr said he

thought I might be chronic). Side effects were horrendous so I thought well

the tablets aren't stopping AF, I feel like sh*t, so why am I taking them? I

had also started my new diet.

The Thursday after xmas, after weaning myself off atenolol, I stopped. I was

scared stiff. I went around with a packet of atenolol in my back pocket. The

Thurs evening, when I would normally have taken a tablet, I got a few missed

and extra beats. But nothing happened. I sort of limped through the next

days waiting for a biggy. Nothing. A week or so after new year I was

standing cooking in the kitchen. I felt like a million dollars. I thought my

seratonin level is coming back. The depression and anxiety I had felt for

years had lifted.

The only two runs I had were in Feb sometime. Once after eating supermarket

cooked southern fried chicken (I knew I shouldn't but I wanted some and it

was a test of sorts). I took 12.5mg atenolol after about 4 hours as I kept

nearly passing out. The run petered out by morning. The other time was mild.

I bought a magnesium citrate supplement. So if anybody wants them it is a

whole bottle with one missing.? Since then I don't believe I have had one

run of AF. I have a lot of ectopics and missed beats (which is the reason I

thought my heart was still irregualr. My resting pulse is between 55 and 65.

So. What can I conclude? Either the tablets made me worse, or my new diet

made me better. I have to conclude it was the diet. I had AF for nearly 10

years before I was diagnosed. The runs came every week or so and were

frightening - I thought they were panic attacks. I thought I was dying or

going to die. So why when I stopped the tablets did it not revert back to my

pre med days. The other thing I have to mention was I was also on an

anticonvulsant for 20 years. I stopped these a year before I stopped heart

meds because I found out my seizures were not caused by Epilepsy. Maybe the

anticonvulsants caused it. Who knows, but I feel better. Even if my temp is

low. But it does not seem to be making AF happen.

>

> If you will look at the survey I

> posted, I ask, for example, if someone's temperature is low, and in

> another question I ask about bowel habits that will also be messed up,

> albeit for other, consequential reasons. If someone has low body

> temperature but reports normal bowel habits, then I would probably

> discard them as an outlier (error detection) unless there were

> several such people.

You'll have to regard me as an outlier. I have normal bowel habits. I don't

seem to have any tummy problems.

Since there is SO much known about normal and

> abnormal metabolic processes, no decision would hinge on a single

> wrong answer. No, I wasn't as complete in this as I could have been,

> because I was looking for a quick glimpse with enough redundancy to

> satisfy even you. If the results are as plain as I hope they are,

> people should be motivated to participate in a much more comprehensive

> survey, that would have SO much redundancy that it would work through

> several wrong answers (error correction).

>

> In your surveys, you could also ask redundant questions, like how many

> attacks per month, average length of an attack, and how many hours per

> month in an attack. Some simple arithmetic will tell you if these are

> all consistent (error detection).

>

> 8. My own standard, which I think is the same as used by the FDA, is

> to be considered a " cure " requires that the condition be gone or

> reduced to nil, WITHOUT needing any continuing medication, and without

> leaving an ongoing problem in place, as the MAZE and ablation

> procedures do by not addressing any of the associated symptoms. In my

> own case, I skip an hour or so of " brain fog " with some espresso in

> the morning, but this is not required either to eventually reach 98.6F

> nor to eliminate my afib. Approximately what do your statistics look

> like if you eliminate those who continue to take prescription

> medication?

>

> Steve

> ============

>

> >

> > <<4. the REALLY IMPORTANT questions to categorize a

> > condition are how the condition acts WITHOUT medication. WITH

> > medication, it may (and probably does) act like an entirely

> different

> > sort of afib.>>

> >

> > I agree that a lot of the useful information needs to be extracted

> when free

> > of drugs but this is a BIG problem if your symptoms are so bad that

> drug free

> > also means a hospital trip where there will start throwing drug into

> you.

> >

> >

> > <<Also, it would be nice to secure tables like this in

> > some sort of portable form, e.g. an .MDB file, so I can throw it

> into

> > ACCESS or EXCEL to do some serious analysis.>>

> >

> > the database section allows you to export as CSV but the poll

> section seems to

> > be missing this trick.

> >

> >

> > <<Also, there are a LOT of uncoded responses, which I would have to

> fix by

> > hand. Hans' surveys address some of these issues, and I have asked

> him for a

> > cluster analysis, but that hasn't been where his interest is.>>

> >

> > Ahh, the delights of analysing data it takes me around a week to

> do the

> > stats page for the database

> > (http://www.dialsolutions.com/af/database/stats161.html)

> > At some point I'd like to spend a week changing the thing so it

> works out more

> > of the stats automatically.

> > Tricky job automating a process that you want to be open and

> flexible.....

> >

> >

> > <<6. So why do I darken your door now that I am " cured " ? Presuming

> that

> > I AM correct that afib is a multiple cause disease, there will be

> > others sooner or later who find the OTHER causes for me to fix in

> > myself. If I could just get everyone to take some temperatures and

> > answer the survey I posted, I would soon have my answer regarding

> just

> > how universal the control system problems are, which would help me

> > quantify just how significant the other causes are, though it still

> > won't tell me WHAT they are.>>

> >

> > Well you know what I think about taking temperatures - jumping to

> any

> > conclusion given inconsistent data you will get from the internet

> community

> > will be crazy in my opinion.

> >

> >

> >

> > <<8. From what I can tell, this group has had a total of 3 real

> success

> > stories during its entire lifetime - worse than expected from the

> > placebo effect, and worse than from Christian Science. It is

> important

> > not only to find the cures to afib, but also to find the cures to

> our

> > own organizational dysfunction. Telling someone who makes a

> suggestion

> > to " You do the analysis " when I am just trying to guide others who

> ARE

> > supposedly already doing the analysis and I am obviously already

> doing

> > a LOT of other things (some of which you are complaining about) is

> > counterproductive.>>

> >

> > if you take a look at the stats page I think it's a bit higher than

> this

> > out of 161 entries

> > 5 cured

> > 4 have episodes more than 1 year apart

> > 7 have episodes longer than 6 months apart

> >

> > I'd don't know if you've entered your details Steve so no number of

> cured

> > might be higher still

> > (It's also worth bearing in mind that the type of folk you are more

> likely to

> > see on the internet are the people having trouble. There may be many

> more out

> > there who are cured and never even thought about pursuing the

> problem on the

> > internet. We are certainly not representative of the whole AFib

> community)

> >

> > All the best

> > --

> > D (33, Leeds, UK)

> > vagal AF for 24 hours every 16 days

>

>

>

>

> Web Page - http://groups.yahoo.com/group/AFIBsupport

> FAQ -

http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm

> For more information: http://www.dialsolutions.com/af

> Unsubscribe: AFIBsupport-unsubscribe

> List owner: AFIBsupport-owner

> For help on how to use the group, including how to drive it via email,

> send a blank email to AFIBsupport-help

>

> Nothing in this message should be considered as medical advice, or should

be acted upon without consultation with one's physician.

>

>

[Guest guest]

Frances:

WOW, what a story! I suspect that if we all put our heads together,

that we could figure out a LOT from this. I'll start the speculative

ball rolling, then stand aside while others toss it around.

You must maintain a particular balance of magnesium, sodium,

potassium, and calcium just to make your neurons work right, and

balance these with other things to make other non-neural systems work

right. A single magnesium pill causing you problems certainly tells me

that either your magnesium is high, or more probably, something else

is too low. There are cheap and simple lab tests for this, which you

should take. If I were you, I would try some salt, salt substitute

(potassium chloride), and a calcium pill, with an hour between each of

them the next time your afib acts up, to see what fixes you. Perhaps

you can find what you are shortest on to upset this balance, and

change your dietary habits accordingly.

Indeed, you DID change your diet. I suspect that if you carefully

analyze both your old diet and your new diet, you will see that your

new diet contains more sodium, potassium, or calcium, and/or less

magnesium. THAT would be another good place to start.

Curiously, magnesium deficiency is the most common of all

deficiencies, yet you apparently have too much. VERY interesting.

Regarding temperature and symptoms. I have found that there are people

who stay low-temp, but who rise up to around 97.9F during the

afternoon. These people don't need as much adrenaline to keep going,

which is what would otherwise mess up their digestion. What is your

afternoon body temperature? If this is you, and if you still have your

tonsils, then you might be one of the lucky ones who can reset their

body temperatures without medication - just lots of espresso and long

hot showers in the morning for a few weeks.

Remain observant and you will eventually get to the bottom of your

(hopefully former) afib.

From the sound of things, you probably have some organic problem

beyond your metabolic control issues (low temp). Keep fixing things

and you'll get better and better. You should fix your low temp, not

for your afib, but because unless you do, the immune suppression that

goes along with low temp will eventually kill you, when you are older

and weaker.

Steve

================

> > >

> > > <<4. the REALLY IMPORTANT questions to categorize a

> > > condition are how the condition acts WITHOUT medication. WITH

> > > medication, it may (and probably does) act like an entirely

> > different

> > > sort of afib.>>

> > >

> > > I agree that a lot of the useful information needs to be

extracted

> > when free

> > > of drugs but this is a BIG problem if your symptoms are so bad

that

> > drug free

> > > also means a hospital trip where there will start throwing drug

into

> > you.

> > >

> > >

> > > <<Also, it would be nice to secure tables like this in

> > > some sort of portable form, e.g. an .MDB file, so I can throw it

> > into

> > > ACCESS or EXCEL to do some serious analysis.>>

> > >

> > > the database section allows you to export as CSV but the poll

> > section seems to

> > > be missing this trick.

> > >

> > >

> > > <<Also, there are a LOT of uncoded responses, which I would have

to

> > fix by

> > > hand. Hans' surveys address some of these issues, and I have

asked

> > him for a

> > > cluster analysis, but that hasn't been where his interest is.>>

> > >

> > > Ahh, the delights of analysing data it takes me around a week

to

> > do the

> > > stats page for the database

> > > (http://www.dialsolutions.com/af/database/stats161.html)

> > > At some point I'd like to spend a week changing the thing so it

> > works out more

> > > of the stats automatically.

> > > Tricky job automating a process that you want to be open and

> > flexible.....

> > >

> > >

> > > <<6. So why do I darken your door now that I am " cured " ?

Presuming

> > that

> > > I AM correct that afib is a multiple cause disease, there will

be

> > > others sooner or later who find the OTHER causes for me to fix

in

> > > myself. If I could just get everyone to take some temperatures

and

> > > answer the survey I posted, I would soon have my answer

regarding

> > just

> > > how universal the control system problems are, which would help

me

> > > quantify just how significant the other causes are, though it

still

> > > won't tell me WHAT they are.>>

> > >

> > > Well you know what I think about taking temperatures - jumping

to

> > any

> > > conclusion given inconsistent data you will get from the

internet

> > community

> > > will be crazy in my opinion.

> > >

> > >

> > >

> > > <<8. From what I can tell, this group has had a total of 3 real

> > success

> > > stories during its entire lifetime - worse than expected from

the

> > > placebo effect, and worse than from Christian Science. It is

> > important

> > > not only to find the cures to afib, but also to find the cures

to

> > our

> > > own organizational dysfunction. Telling someone who makes a

> > suggestion

> > > to " You do the analysis " when I am just trying to guide others

who

> > ARE

> > > supposedly already doing the analysis and I am obviously already

> > doing

> > > a LOT of other things (some of which you are complaining about)

is

> > > counterproductive.>>

> > >

> > > if you take a look at the stats page I think it's a bit higher

than

> > this

> > > out of 161 entries

> > > 5 cured

> > > 4 have episodes more than 1 year apart

> > > 7 have episodes longer than 6 months apart

> > >

> > > I'd don't know if you've entered your details Steve so no number

of

> > cured

> > > might be higher still

> > > (It's also worth bearing in mind that the type of folk you are

more

> > likely to

> > > see on the internet are the people having trouble. There may be

many

> > more out

> > > there who are cured and never even thought about pursuing the

> > problem on the

> > > internet. We are certainly not representative of the whole AFib

> > community)

> > >

> > > All the best

> > > --

> > > D (33, Leeds, UK)

> > > vagal AF for 24 hours every 16 days

> >

> >

> >

> >

> > Web Page - http://groups.yahoo.com/group/AFIBsupport

> > FAQ -

>

http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm

> > For more information: http://www.dialsolutions.com/af

> > Unsubscribe: AFIBsupport-unsubscribe@y...

> > List owner: AFIBsupport-owner@y...

> > For help on how to use the group, including how to drive it via

email,

> > send a blank email to AFIBsupport-help@y...

> >

> > Nothing in this message should be considered as medical advice, or

should

> be acted upon without consultation with one's physician.

> >

> >

[Guest guest]

In a message dated 4/10/2002 6:31:53 PM Pacific Daylight Time,

AFIBsupport@... writes:

<< If I were you, I would try some salt, salt substitute

(potassium chloride), and a calcium pill, with an hour between each of

them the next time your afib acts up, to see what fixes you. >>

Fran,

If I were you, I wouldn't try the above combination unless you check with a

doctor.

You probably know this, but just in case you don't, I thought I should write.

Potassium can be dangerous and toxic in large amounts and, therefore, is not

a substance with which one should experiment without a doctor's supervision.

I'm sure that you know enough to " take with a grain of salt " (bad pun

intended) any advice given by the medical nonprofessionals on this board,

including me. However, I am especially sensitive on the issue of electrolyte

experimentation since my mother is dead because of improper supervision of

electrolyte balance (magnesium, salt, and potassium). My mother's experience

has convinced me that electrolyte balance is not to be experimented with

casually. The line between brain damage and death is a fine one which is

easily breached by too much or too little of electrolyte substances,

especially potassium and salt. Once the damage is done, it can be

irreversible, as in the case of my mother. She did live for a year after the

electrolyte crisis, but she was an empty shell of her former self and keeping

her alive was a full time job. Another issue to consider is that some

medications are potassium conservers, and only a doctor would be able to tell

you if you are taking a medication that would prevent excretion of potassium,

thereby causing a buildup to toxicity. Since I have seen first hand the

devastation caused by inadequate medical supervision of electrolyte levels,

I cringe when someone blithely suggests experimentation in this critical area.

Best wishes,

in sinus in Seattle (Day 26 with normal electrolyte levels which have

been checked by my doctor, the only way to go)

[Guest guest]

on Wed, 10 Apr 2002 at 21:41:23, Frances Ross

wrote :

>My resting pulse is between 55 and 65.

>

>So. What can I conclude? Either the tablets made me worse, or my new diet

>made me better. I have to conclude it was the diet.

Fran,

Don't forget digoxin, sotalol and atenolol are *all* contra-indicated

for vagally-mediated AF, which your heart rate tends to indicate is your

tendency. So I am not surprised coming off them helped. But I think

anything else we do to help ourselves can also be significant, so I am

sure your diet helped, too.

As a matter of interest, what did Flecainide do for/to you and why were

you on it for such a short time?

Best of health to all,

Vicky

London, UK, 1954 model

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

" All truth goes through three stages: first it is ridiculed, then

it is violently opposed, finally it is accepted as self evident. "

- Schopenhauer

--------------------------------------------------------------------------------\

-------------

[Guest guest]

Fran:

has some really good points here. As I mentioned in my earlier

posting, you should get your electrolytes tested first to see if there

is something that the lab can find wrong there.

Unfortunately, we live in a three-tier society. At the top, there are

the people with enough money to fast-forward past all of the liability

concerns that the doctors might have to get what is best for them.

At the middle, there are people who have ordinary access to " the

standard, substandard treatments " for costs that often exceeds their

disposable income, and then...

At the bottom are the sick people, whose finances have been trashed by

their illness, and who often have little or no access to doctors,

except in the most extreme of emergencies. Of course, these are the

people who really need the help. I know that there are a lot of people

at this level, and so include " do it yourself " information where

possible.

What a lot of people on this group miss is that, while afib itself

isn't particularly dangerous, some of the conditions that precipitate

it ARE dangerous. If 's concerns prove to be valid, that your

electrolytes are " on the edge " and even a little experimentation could

prove harmful, and do I agree that this is a possiblity, then they

will eventually " take you out " anyway, which greatly increases the

value of knowing what is happening. If you can't afford the lab tests,

then the experimentation that I am suggesting may be your only, albeit

more dangerous alternative.

There has been the view expressed recently that we should take no

risks, lest we be blamed for the results. Risk is unavoidable, so all

we can do is to manage them. Risk is what sepearates top from middle

tier medicine as mentioned above, and is THE essential element in top

tier medicine.

Of course, all experiments should be designed to minimize risk as much

as possible. You've heard my story about my temperature resetting,

where the biggest risk was doing a half-assed job, so damn the

torpedoes, full speed ahead.

However, in tweaking electrolytes, go VERY easy and watch for any

evidence of things getting worse, or better yet, get those lab tests

if you can afford them. Certainly, no doctor would give you

electrolytes without guidance from a lab test.

Steve

================

> In a message dated 4/10/2002 6:31:53 PM Pacific Daylight Time,

> AFIBsupport@s... writes:

>

> << If I were you, I would try some salt, salt substitute

> (potassium chloride), and a calcium pill, with an hour between each

of

> them the next time your afib acts up, to see what fixes you. >>

>

> Fran,

> If I were you, I wouldn't try the above combination unless you check

with a

> doctor.

> You probably know this, but just in case you don't, I thought I

should write.

> Potassium can be dangerous and toxic in large amounts and,

therefore, is not

> a substance with which one should experiment without a doctor's

supervision.

> I'm sure that you know enough to " take with a grain of salt " (bad

pun

> intended) any advice given by the medical nonprofessionals on this

board,

> including me. However, I am especially sensitive on the issue of

electrolyte

> experimentation since my mother is dead because of improper

supervision of

> electrolyte balance (magnesium, salt, and potassium). My mother's

experience

> has convinced me that electrolyte balance is not to be experimented

with

> casually. The line between brain damage and death is a fine one

which is

> easily breached by too much or too little of electrolyte substances,

> especially potassium and salt. Once the damage is done, it can be

> irreversible, as in the case of my mother. She did live for a year

after the

> electrolyte crisis, but she was an empty shell of her former self

and keeping

> her alive was a full time job. Another issue to consider is that

some

> medications are potassium conservers, and only a doctor would be

able to tell

> you if you are taking a medication that would prevent excretion of

potassium,

> thereby causing a buildup to toxicity. Since I have seen first hand

the

> devastation caused by inadequate medical supervision of electrolyte

levels,

> I cringe when someone blithely suggests experimentation in this

critical area.

> Best wishes,

> in sinus in Seattle (Day 26 with normal electrolyte levels

which have

> been checked by my doctor, the only way

to go)

[Guest guest]

You left out a tier. Those of us who have ordinary access to treatments

are working well for us, treatments that are within our disposable

income.

Don't forget about those of us who are doing well!

Re: Triggers , was: Amalgam removal, etc.

Unfortunately, we live in a three-tier society. At the top, there are

the people with enough money to fast-forward past all of the liability

concerns that the doctors might have to get what is best for them.

At the middle, there are people who have ordinary access to " the

standard, substandard treatments " for costs that often exceeds their

disposable income, and then...

At the bottom are the sick people, whose finances have been trashed by

their illness, and who often have little or no access to doctors,

except in the most extreme of emergencies. Of course, these are the

people who really need the help. I know that there are a lot of people

at this level, and so include " do it yourself " information where

possible.

What a lot of people on this group miss is that, while afib itself

isn't particularly dangerous, some of the conditions that precipitate

it ARE dangerous. If 's concerns prove to be valid, that your

electrolytes are " on the edge " and even a little experimentation could

prove harmful, and do I agree that this is a possiblity, then they

will eventually " take you out " anyway, which greatly increases the

value of knowing what is happening. If you can't afford the lab tests,

then the experimentation that I am suggesting may be your only, albeit

more dangerous alternative.

[Guest guest]

Well Steve, I know something is out of balance. Every so often I get runs of

vertigo. I am in the middle of one right now. Can someone say whether the

dizziness they get with AF is continual, as the dizziness I used to get with

it was not. This feels different. Sometimes I get it when I take

antibiotics, sometimes after the dentist and sometimes for no apparent

reason. This time my vertigo didn't come with the antibiotics. It came two

days after. It was quite mild for a few days, but today it is getting to the

disabilitating. I have to keep my head as still as possible. I can't lie

back or look up. My heart has been doing funny blips and things, but still

it does not feel like AF. I wish I had the King of Hearts now, not in the

next week or so!!

All day I have been asking myself why. I've come up with a lack of salt or a

lack of sugar. I don't think it is calcium as I have what I was led to

believe were calcium spots. My diet has eliminated a lot of salt as it was

in the processed food. Now I only add sea salt to my own cooking. Today I

put some on my hand and licked it. It hit the spot. The only sugar I have

been eating has been in fruit etc. I made an apple and cinnamon pie for

pudding this evening, with lots of brown sugar and drank two glasses of

ribena. It seems to have helped a bit. I was wondering about a diabetes type

thing

PErhaps I have been eating too much magnesium. I have been eating lots of

nuts, oily fish, advacado etc. I know its just a matter of balance, but it

seems everytime I balance one thing it unbalances something else. I'll keep

listening to my body.

Cheers

Fran

Re: Triggers , was: Amalgam removal, etc.

> Frances:

>

> WOW, what a story! I suspect that if we all put our heads together,

> that we could figure out a LOT from this. I'll start the speculative

> ball rolling, then stand aside while others toss it around.

>

> You must maintain a particular balance of magnesium, sodium,

> potassium, and calcium just to make your neurons work right, and

> balance these with other things to make other non-neural systems work

> right. A single magnesium pill causing you problems certainly tells me

> that either your magnesium is high, or more probably, something else

> is too low. There are cheap and simple lab tests for this, which you

> should take. If I were you, I would try some salt, salt substitute

> (potassium chloride), and a calcium pill, with an hour between each of

> them the next time your afib acts up, to see what fixes you. Perhaps

> you can find what you are shortest on to upset this balance, and

> change your dietary habits accordingly.

>

> Indeed, you DID change your diet. I suspect that if you carefully

> analyze both your old diet and your new diet, you will see that your

> new diet contains more sodium, potassium, or calcium, and/or less

> magnesium. THAT would be another good place to start.

>

> Curiously, magnesium deficiency is the most common of all

> deficiencies, yet you apparently have too much. VERY interesting.

>

> Regarding temperature and symptoms. I have found that there are people

> who stay low-temp, but who rise up to around 97.9F during the

> afternoon. These people don't need as much adrenaline to keep going,

> which is what would otherwise mess up their digestion. What is your

> afternoon body temperature? If this is you, and if you still have your

> tonsils, then you might be one of the lucky ones who can reset their

> body temperatures without medication - just lots of espresso and long

> hot showers in the morning for a few weeks.

>

> Remain observant and you will eventually get to the bottom of your

> (hopefully former) afib.

>

> >From the sound of things, you probably have some organic problem

> beyond your metabolic control issues (low temp). Keep fixing things

> and you'll get better and better. You should fix your low temp, not

> for your afib, but because unless you do, the immune suppression that

> goes along with low temp will eventually kill you, when you are older

> and weaker.

>

> Steve

> ================

>

> > > >

> > > > <<4. the REALLY IMPORTANT questions to categorize a

> > > > condition are how the condition acts WITHOUT medication. WITH

> > > > medication, it may (and probably does) act like an entirely

> > > different

> > > > sort of afib.>>

> > > >

> > > > I agree that a lot of the useful information needs to be

> extracted

> > > when free

> > > > of drugs but this is a BIG problem if your symptoms are so bad

> that

> > > drug free

> > > > also means a hospital trip where there will start throwing drug

> into

> > > you.

> > > >

> > > >

> > > > <<Also, it would be nice to secure tables like this in

> > > > some sort of portable form, e.g. an .MDB file, so I can throw it

> > > into

> > > > ACCESS or EXCEL to do some serious analysis.>>

> > > >

> > > > the database section allows you to export as CSV but the poll

> > > section seems to

> > > > be missing this trick.

> > > >

> > > >

> > > > <<Also, there are a LOT of uncoded responses, which I would have

> to

> > > fix by

> > > > hand. Hans' surveys address some of these issues, and I have

> asked

> > > him for a

> > > > cluster analysis, but that hasn't been where his interest is.>>

> > > >

> > > > Ahh, the delights of analysing data it takes me around a week

> to

> > > do the

> > > > stats page for the database

> > > > (http://www.dialsolutions.com/af/database/stats161.html)

> > > > At some point I'd like to spend a week changing the thing so it

> > > works out more

> > > > of the stats automatically.

> > > > Tricky job automating a process that you want to be open and

> > > flexible.....

> > > >

> > > >

> > > > <<6. So why do I darken your door now that I am " cured " ?

> Presuming

> > > that

> > > > I AM correct that afib is a multiple cause disease, there will

> be

> > > > others sooner or later who find the OTHER causes for me to fix

> in

> > > > myself. If I could just get everyone to take some temperatures

> and

> > > > answer the survey I posted, I would soon have my answer

> regarding

> > > just

> > > > how universal the control system problems are, which would help

> me

> > > > quantify just how significant the other causes are, though it

> still

> > > > won't tell me WHAT they are.>>

> > > >

> > > > Well you know what I think about taking temperatures - jumping

> to

> > > any

> > > > conclusion given inconsistent data you will get from the

> internet

> > > community

> > > > will be crazy in my opinion.

> > > >

> > > >

> > > >

> > > > <<8. From what I can tell, this group has had a total of 3 real

> > > success

> > > > stories during its entire lifetime - worse than expected from

> the

> > > > placebo effect, and worse than from Christian Science. It is

> > > important

> > > > not only to find the cures to afib, but also to find the cures

> to

> > > our

> > > > own organizational dysfunction. Telling someone who makes a

> > > suggestion

> > > > to " You do the analysis " when I am just trying to guide others

> who

> > > ARE

> > > > supposedly already doing the analysis and I am obviously already

> > > doing

> > > > a LOT of other things (some of which you are complaining about)

> is

> > > > counterproductive.>>

> > > >

> > > > if you take a look at the stats page I think it's a bit higher

> than

> > > this

> > > > out of 161 entries

> > > > 5 cured

> > > > 4 have episodes more than 1 year apart

> > > > 7 have episodes longer than 6 months apart

> > > >

> > > > I'd don't know if you've entered your details Steve so no number

> of

> > > cured

> > > > might be higher still

> > > > (It's also worth bearing in mind that the type of folk you are

> more

> > > likely to

> > > > see on the internet are the people having trouble. There may be

> many

> > > more out

> > > > there who are cured and never even thought about pursuing the

> > > problem on the

> > > > internet. We are certainly not representative of the whole AFib

> > > community)

> > > >

> > > > All the best

> > > > --

> > > > D (33, Leeds, UK)

> > > > vagal AF for 24 hours every 16 days

> > >

> > >

> > >

> > >

> > > Web Page - http://groups.yahoo.com/group/AFIBsupport

> > > FAQ -

> >

> http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm

> > > For more information: http://www.dialsolutions.com/af

> > > Unsubscribe: AFIBsupport-unsubscribe@y...

> > > List owner: AFIBsupport-owner@y...

> > > For help on how to use the group, including how to drive it via

> email,

> > > send a blank email to AFIBsupport-help@y...

> > >

> > > Nothing in this message should be considered as medical advice, or

> should

> > be acted upon without consultation with one's physician.

> > >

> > >

[Guest guest]

Hi again

Thanks for the words of wisdom. I never try anything unless I am triple

sure. I muck about with my diet, but as you know I wouldn't take a pill. I

try to balance everything I eat (but I know my salt and sugar has been very

low).

My father (its his memorial and interment of his ashes next wed) died

suddenly last year on April 17 after an early onset dementia they couldn't

define. I worry because I remember as a girl growing up my father wouldn't

eat any processed foods etc. Then he started eating supplements after

supplements. He got worse and worse. No-one knows what killed him. They put

pneumonia down on the death certificate, but he hadn't been ill.

I've tried supplements and each one has an adverse effect on me. I put it

down to the extraction method, which is akin to processing food. IF I needed

more calcium I would eat more milk and cheese, but I do not think I do.

Fran

Re: Re: Triggers , was: Amalgam removal, etc.

> In a message dated 4/10/2002 6:31:53 PM Pacific Daylight Time,

> AFIBsupport@... writes:

>

> << If I were you, I would try some salt, salt substitute

> (potassium chloride), and a calcium pill, with an hour between each of

> them the next time your afib acts up, to see what fixes you. >>

>

> Fran,

> If I were you, I wouldn't try the above combination unless you check with

a

> doctor.

> You probably know this, but just in case you don't, I thought I should

write.

> Potassium can be dangerous and toxic in large amounts and, therefore, is

not

> a substance with which one should experiment without a doctor's

supervision.

> I'm sure that you know enough to " take with a grain of salt " (bad pun

> intended) any advice given by the medical nonprofessionals on this board,

> including me. However, I am especially sensitive on the issue of

electrolyte

> experimentation since my mother is dead because of improper supervision of

> electrolyte balance (magnesium, salt, and potassium). My mother's

experience

> has convinced me that electrolyte balance is not to be experimented with

> casually. The line between brain damage and death is a fine one which is

> easily breached by too much or too little of electrolyte substances,

> especially potassium and salt. Once the damage is done, it can be

> irreversible, as in the case of my mother. She did live for a year after

the

> electrolyte crisis, but she was an empty shell of her former self and

keeping

> her alive was a full time job. Another issue to consider is that some

> medications are potassium conservers, and only a doctor would be able to

tell

> you if you are taking a medication that would prevent excretion of

potassium,

> thereby causing a buildup to toxicity. Since I have seen first hand the

> devastation caused by inadequate medical supervision of electrolyte

levels,

> I cringe when someone blithely suggests experimentation in this critical

area.

> Best wishes,

> in sinus in Seattle (Day 26 with normal electrolyte levels which have

> been checked by my doctor, the only way to go)

>

>

> Web Page - http://groups.yahoo.com/group/AFIBsupport

> FAQ -

http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm

> For more information: http://www.dialsolutions.com/af

> Unsubscribe: AFIBsupport-unsubscribe

> List owner: AFIBsupport-owner

> For help on how to use the group, including how to drive it via email,

> send a blank email to AFIBsupport-help

>

> Nothing in this message should be considered as medical advice, or should

be acted upon without consultation with one's physician.

>

>

[Guest guest]

Hi there

I realise that the tablets were having an adverse reaction on me and were

infact contraindicated for vagal AF. I think the point I meant to make was

the difference between my pre med days AF and post med days. How they had

changed for the seemingly better.

The Flecainide was brilliant for the first two days. Then on the third day I

woke up and was tremoring from head to foot. Light was pulsating in my eyes

from really bright to dark. My heart was racing and I couldn't sit still. I

went to the GP who ran me through to the surgery where they have an ECG

machine. It showed I was in SINUS tachycardia. He said I had to stop.

Tremors and pulsating light are seeminly an allergic reaction to Flecainide.

So he gave me atenolol.

Fran

Re: Re: Triggers , was: Amalgam removal, etc.

> on Wed, 10 Apr 2002 at 21:41:23, Frances Ross

> wrote :

>

> >My resting pulse is between 55 and 65.

> >

> >So. What can I conclude? Either the tablets made me worse, or my new diet

> >made me better. I have to conclude it was the diet.

>

> Fran,

>

> Don't forget digoxin, sotalol and atenolol are *all* contra-indicated

> for vagally-mediated AF, which your heart rate tends to indicate is your

> tendency. So I am not surprised coming off them helped. But I think

> anything else we do to help ourselves can also be significant, so I am

> sure your diet helped, too.

>

> As a matter of interest, what did Flecainide do for/to you and why were

> you on it for such a short time?

>

>

> Best of health to all,

> Vicky

>

> London, UK, 1954 model

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

>

> " All truth goes through three stages: first it is ridiculed, then

> it is violently opposed, finally it is accepted as self evident. "

> - Schopenhauer

> --------------------------------------------------------------------------

-------------------

>

>

> Web Page - http://groups.yahoo.com/group/AFIBsupport

> FAQ -

http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm

> For more information: http://www.dialsolutions.com/af

> Unsubscribe: AFIBsupport-unsubscribe

> List owner: AFIBsupport-owner

> For help on how to use the group, including how to drive it via email,

> send a blank email to AFIBsupport-help

>

> Nothing in this message should be considered as medical advice, or should

be acted upon without consultation with one's physician.

>

>

[Guest guest]

Bobby:

Yes, I agree that the standard, substandard treatment does work well

for a small minority. As I explained to , When you look at the

actual numbers, it appears that the success rate of the standard,

substandard treatment is probably LOWER than either placebos or

Christian Science. There are two good technical reasons for this:

1. Learned Distress (LD), a phenomenon that is now receiving more

study. Here, your feeling that there is something wrong with you

guides your metabolic control system to make decisions that will make

your feel worse in the long run.

2. Some people's afib appears to be made WORSE by avoiding triggers. I

explained this to a while back. As soon as the doctors and our

group rush to the rescue and focus attention on the afib, the patient

starts avoiding triggers, and the downhill spiral begins in earnest.

Also, I know of no treatments that also address the various symptoms

that typically accompany afib. Hence, while heartrates may be

stabilized by drugs, many patients continue to look pregnant and feel

bad.

No, there is no such additional tier as you suggest, just a few lucky

patients for which the middle tier actually works as intended.

Steve

===================

> You left out a tier. Those of us who have ordinary access to

treatments

> are working well for us, treatments that are within our disposable

> income.

>

> Don't forget about those of us who are doing well!

>

> Re: Triggers , was: Amalgam removal, etc.

>

>

> Unfortunately, we live in a three-tier society. At the top, there

are

> the people with enough money to fast-forward past all of the

liability

> concerns that the doctors might have to get what is best for them.

>

> At the middle, there are people who have ordinary access to " the

> standard, substandard treatments " for costs that often exceeds their

> disposable income, and then...

>

> At the bottom are the sick people, whose finances have been trashed

by

> their illness, and who often have little or no access to doctors,

> except in the most extreme of emergencies. Of course, these are the

> people who really need the help. I know that there are a lot of

people

> at this level, and so include " do it yourself " information where

> possible.

>

> What a lot of people on this group miss is that, while afib itself

> isn't particularly dangerous, some of the conditions that

precipitate

> it ARE dangerous. If 's concerns prove to be valid, that your

> electrolytes are " on the edge " and even a little experimentation

could

> prove harmful, and do I agree that this is a possiblity, then they

> will eventually " take you out " anyway, which greatly increases the

> value of knowing what is happening. If you can't afford the lab

tests,

> then the experimentation that I am suggesting may be your only,

albeit

> more dangerous alternative.

[Guest guest]

Fran:

You might try going to a doctor, but NOT telling him that you have

afib! There are a LOT of causes of dizziness, most of which are

connected with blood pressure in some way. Telling your doctor

that you have afib will just limit his thinking. What IS your BP when

you are having these problems (hint, there are BP machines at Walmart

and many drug stores)?

An experiment is to drink a bunch of water to push your BP up, and see

if that helps. We also discussed analyzing your electrolytes.

Low daytime body temperature begets insulin resistant diabetes, so you

might get an HA1C test for this. It also begets low BP, but it never

caused me any vertigo when I had it.

In any case, I would get some blood work done if I were were you. Even

if it fails to tell you what is wrong, it will tell you that a LOT of

things aren't wrong, which will limit useless speculation.

Steve

================

> > > > >

> > > > > <<4. the REALLY IMPORTANT questions to categorize a

> > > > > condition are how the condition acts WITHOUT medication.

WITH

> > > > > medication, it may (and probably does) act like an entirely

> > > > different

> > > > > sort of afib.>>

> > > > >

> > > > > I agree that a lot of the useful information needs to be

> > extracted

> > > > when free

> > > > > of drugs but this is a BIG problem if your symptoms are so

bad

> > that

> > > > drug free

> > > > > also means a hospital trip where there will start throwing

drug

> > into

> > > > you.

> > > > >

> > > > >

> > > > > <<Also, it would be nice to secure tables like this in

> > > > > some sort of portable form, e.g. an .MDB file, so I can

throw it

> > > > into

> > > > > ACCESS or EXCEL to do some serious analysis.>>

> > > > >

> > > > > the database section allows you to export as CSV but the

poll

> > > > section seems to

> > > > > be missing this trick.

> > > > >

> > > > >

> > > > > <<Also, there are a LOT of uncoded responses, which I would

have

> > to

> > > > fix by

> > > > > hand. Hans' surveys address some of these issues, and I have

> > asked

> > > > him for a

> > > > > cluster analysis, but that hasn't been where his interest

is.>>

> > > > >

> > > > > Ahh, the delights of analysing data it takes me around a

week

> > to

> > > > do the

> > > > > stats page for the database

> > > > > (http://www.dialsolutions.com/af/database/stats161.html)

> > > > > At some point I'd like to spend a week changing the thing so

it

> > > > works out more

> > > > > of the stats automatically.

> > > > > Tricky job automating a process that you want to be open and

> > > > flexible.....

> > > > >

> > > > >

> > > > > <<6. So why do I darken your door now that I am " cured " ?

> > Presuming

> > > > that

> > > > > I AM correct that afib is a multiple cause disease, there

will

> > be

> > > > > others sooner or later who find the OTHER causes for me to

fix

> > in

> > > > > myself. If I could just get everyone to take some

temperatures

> > and

> > > > > answer the survey I posted, I would soon have my answer

> > regarding

> > > > just

> > > > > how universal the control system problems are, which would

help

> > me

> > > > > quantify just how significant the other causes are, though

it

> > still

> > > > > won't tell me WHAT they are.>>

> > > > >

> > > > > Well you know what I think about taking temperatures -

jumping

> > to

> > > > any

> > > > > conclusion given inconsistent data you will get from the

> > internet

> > > > community

> > > > > will be crazy in my opinion.

> > > > >

> > > > >

> > > > >

> > > > > <<8. From what I can tell, this group has had a total of 3

real

> > > > success

> > > > > stories during its entire lifetime - worse than expected

from

> > the

> > > > > placebo effect, and worse than from Christian Science. It is

> > > > important

> > > > > not only to find the cures to afib, but also to find the

cures

> > to

> > > > our

> > > > > own organizational dysfunction. Telling someone who makes a

> > > > suggestion

> > > > > to " You do the analysis " when I am just trying to guide

others

> > who

> > > > ARE

> > > > > supposedly already doing the analysis and I am obviously

already

> > > > doing

> > > > > a LOT of other things (some of which you are complaining

about)

> > is

> > > > > counterproductive.>>

> > > > >

> > > > > if you take a look at the stats page I think it's a bit

higher

> > than

> > > > this

> > > > > out of 161 entries

> > > > > 5 cured

> > > > > 4 have episodes more than 1 year apart

> > > > > 7 have episodes longer than 6 months apart

> > > > >

> > > > > I'd don't know if you've entered your details Steve so no

number

> > of

> > > > cured

> > > > > might be higher still

> > > > > (It's also worth bearing in mind that the type of folk you

are

> > more

> > > > likely to

> > > > > see on the internet are the people having trouble. There may

be

> > many

> > > > more out

> > > > > there who are cured and never even thought about pursuing

the

> > > > problem on the

> > > > > internet. We are certainly not representative of the whole

AFib

> > > > community)

> > > > >

> > > > > All the best

> > > > > --

> > > > > D (33, Leeds, UK)

> > > > > vagal AF for 24 hours every 16 days

> > > >

> > > >

> > > >

> > > >

> > > > Web Page - http://groups.yahoo.com/group/AFIBsupport

> > > > FAQ -

> > >

> >

http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm

> > > > For more information: http://www.dialsolutions.com/af

> > > > Unsubscribe: AFIBsupport-unsubscribe@y...

> > > > List owner: AFIBsupport-owner@y...

> > > > For help on how to use the group, including how to drive it

via

> > email,

> > > > send a blank email to AFIBsupport-help@y...

> > > >

> > > > Nothing in this message should be considered as medical

advice, or

> > should

> > > be acted upon without consultation with one's physician.

> > > >

> > > >

[Guest guest]

<<Bobby:

Yes, I agree that the standard, substandard treatment does work well

for a small minority. As I explained to , When you look at the

actual numbers, it appears that the success rate of the standard,

substandard treatment is probably LOWER than either placebos or

Christian Science. There are two good technical reasons for this:>>

Technical reason no 3.

This group has 369 members of which around 50 are regular or occasional

posters, to assume that this 50 is representative of the 5 million + people

with AF I think is stretching the imagination somewhat. I'd love to know how

many of the 5 million are cured or symptom free but I'm certain you can't

extrapolate this groups numbers to find out. I'm also certain that joining

this group has not made my AF worse.

<<2. Some people's afib appears to be made WORSE by avoiding triggers. I

explained this to a while back. As soon as the doctors and our

group rush to the rescue and focus attention on the afib, the patient

starts avoiding triggers, and the downhill spiral begins in earnest.>>

Almost all of this groups discussions are based on triggers. Ablations take up

a small percentage of the topics (but we welcome the discussions!). Maze

procedures are predominantly dealt with by Jack's site. Many of the 'standard'

meds we talk about could well be addressing trigger problems (electrolyte

imbalance and organic disease). And I'm happy to talk about the meds that are

simply there to alleviate symptoms and do nothing to improve AF (I'm on one

myself). I'm not sure we've ever rushed to the rescue an talked about AFib,

I'm pretty sure most of us try to address the content of the email that is

asking the questions, I don't recall one that wanted to talk about AFib for

AFib's sake.

--

D

[Guest guest]

The last poll I took regarding amount of time in afib, 36% (13 out

of 36 replies) said they they fell into the category:

Normal rhythm but infrequent bouts with afib (more than one month

between occurrences) (33.33%)

Or

Never (with treatment) (2.78%)

This poll did not discuss methods, but I'm sure that all of those

people didn't get there by " resetting their temperature " . In fact I

don't believe any of them did, but I may be wrong.

I believe it would be safe to assume that more than a few of these

people fall into the " ordinary access " category. That's more than a

few lucky patients. Same as placebo? Be serious.

The purpose of this group is to help offer support to people with

afib. Not scare them away.

Re: Triggers , was: Amalgam removal, etc.

snip

No, there is no such additional tier as you suggest, just a few

lucky

patients for which the middle tier actually works as intended.

snip

[Guest guest]

on Thu, 11 Apr 2002 at 18:44:45, Frances Ross

wrote :

(Lots, snipped)

Fran,

What I would say from my own experience is that whilst we all need to be

aware that what we eat and supplement is important, it is also very

important to get a good balance.

At one point just before my AF got worse, I was able to stop attacks by

still being VERY careful what I eat, but it eventually got that I had to

be SO careful, I was eating basically a very poor diet, lost a lot of

weight, lost a lot of energy, etc. Since discovering my wheat

sensitivity and eliminating that, and now particularly with drinking

much more water, I have returned to a much broader diet, have stopped

being largely vegetarian, and I do feel better " in myself " . The other

thing was I was taking the wrong balance of Mg and Ca. I was

supplementing Mg but not Ca, and felt I was getting enough Ca from my

diet, but clearly I wasn't, since my nails starting cracking like crazy.

Of course everyone's case will be different, and I doubt yours will be

the same or even similar to mine, but the point I am making is keep your

diet varied and don't rely too much on supplements. Even the very

pro-vits types agree that getting what you need from food is usually

better.

Best of health to all,

Vicky

London, UK, 1954 model

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

" R-ecapture H-earing Y-our T-rue H-eart M-elody " - R.

--------------------------------------------------------------------------------\

-------------