cardiac tests

Hi all,

I have ES & MCS and CFS - likely not uncommon here- with cardiac
problems becoming more pronounced. I can't spend too much time at the
computer but did a quick search - couldn't find anything re testing...

Does anyone have any thots on Echocardiograms - any use doing it?
Will it cause lasting negative effects...?

What about Cardiac Impedance testing? or something like that that will
measure diastolic function -which is more likely to be a problem in CFS.

Does anyone in Southern Ontario have any good experience with cardiac
or other specialists who really know and understand our problems?

Dr.Cheney is good but he's too far away - there must be others around
here who have picked up on his work...

Thanks in advance for any help anyone can give!
~ daisy

I've heard of palpitations and heart rate increases with exposurein *some*
with EHS. Would not need an echo to see those.

There is some evidence ultrasound causes nerve damage,
depending on dose. But if you think you may need some kind
of heart surgery, it might be worth it. I had an echo years ago
before I had EHS and no problems from it.

Bill

On Fri, Feb 13, 2009 at 3:54 PM, mcsdaisy <[hidden email]> wrote:


[Non-text portions of this message have been removed]

Hi, Daisy,
 
What kind of cardiac problems do you have, Daisy?  There are cardiac symptoms which go along with ES which are not really cardiac, as much they are autonomic nervous system/ adrenal related.  These include rapid heart beat, skipped beats, losing your breath due to fast heart beat....  When Ibegan having problems (decades ago), I had EKGs, etc, and nothing organic was found because it ended up being autonomic nervous system related.  Ofcourse, you should have tests if you haven't yet, because, for you, it could be heart related!  But don't be surprised or alarmed if nothing major is found.

Hope it works out for you,
Diane
--- On Fri, 2/13/09, mcsdaisy <[hidden email]> wrote:

From: mcsdaisy <[hidden email]>
Subject: [eSens] cardiac tests
To: [hidden email]
Date: Friday, February 13, 2009, 5:54 PM






Hi all,

I have ES & MCS and CFS - likely not uncommon here- with cardiac
problems becoming more pronounced. I can't spend too much time at the
computer but did a quick search - couldn't find anything re testing...

Does anyone have any thots on Echocardiograms - any use doing it?
Will it cause lasting negative effects...?

What about Cardiac Impedance testing? or something like that that will
measure diastolic function -which is more likely to be a problem in CFS.

Does anyone in Southern Ontario have any good experience with cardiac
or other specialists who really know and understand our problems?

Dr.Cheney is good but he's too far away - there must be others around
here who have picked up on his work...

Thanks in advance for any help anyone can give!
~ daisy

















     

[Non-text portions of this message have been removed]

Hi Diane,
 
The symptoms and weakness have been so bad (palp, skipping, irreg
beat with SOB, crushing adn burning chest pain with SOB, anxiety,
sweats, runs... all the symptoms of a heart attack or angina but when
I've gone to emerg blood tests showed no evidence of having had a
heart attack.
Yet after such episodes I am ssoooo weak, tired, sore and it takes
ages to build up my activity levels again.

I think it is ANS related as you suggest but more than that - also
CFS related my doc thinks - more to do with diastolic
functioning ... ? (which doesn't show on the echo either?)
I don't really expect that they'll find much on the Echo b/c they've
never found anything before (except mitral valve prolapse years ago -
which didn't show up on the most recent test 4 years ago) - except
that I've been more disabled by the symptoms lately.

I'd rather not do the echo if it will make things worse (doc does
leave it up to me thankfully)
and if there were better tests that show the functioning
problems...I'd do that.

I wish I could find a specialist who knows about this (like
Dr.Cheney)...

If anyone has any good CFS/heart specialist in Ont, please let me
know.

Thanks!


--- In [hidden email], Evie <evie15422@...> wrote:
>
> Hi, Daisy,
>  
> What kind of cardiac problems do you have, Daisy?  There are
cardiac symptoms which go along with ES which are not really cardiac,
as much they are autonomic nervous system/ adrenal related.  These
include rapid heart beat, skipped beats, losing your breath due to
fast heart beat....  When I began having problems (decades ago), I
had EKGs, etc, and nothing organic was found because it ended up
being autonomic nervous system related.  Of course, you should have
tests if you haven't yet, because, for you, it could be heart
related!  But don't be surprised or alarmed if nothing major is found. the
> computer but did a quick search - couldn't find anything re
testing...
>
> Does anyone have any thots on Echocardiograms - any use doing it?
> Will it cause lasting negative effects...?
>
> What about Cardiac Impedance testing? or something like that that
will
> measure diastolic function -which is more likely to be a problem in
CFS.
>
> Does anyone in Southern Ontario have any good experience with
cardiac
> or other specialists who really know and understand our problems?
>
> Dr.Cheney is good but he's too far away - there must be others
around

Hi Daisy
 
I don't know of anyone in Ontario but there is an amazing guy called Dr Byron Hyde who does have a clinic somewhere in Canada - he will run a whole battery of tests [tests that other docs wouldn't even think of running because they might be outside the box - not in a harmful way but he thinks very imaginatively if you know what I mean] He has a website called the Nightingale Foundation [based in California I think] which you can look up on google.. I know of him through CFS, and have read some of his stuff and seen a few of his presentations on video. Check him out - he's costly but he is one of the good guys.
 
Best wishes
 
Steph

--- On Fri, 20/2/09, mcsdaisy <[hidden email]> wrote:

From: mcsdaisy <[hidden email]>
Subject: [eSens] Re: cardiac tests
To: [hidden email]
Date: Friday, 20 February, 2009, 11:59 PM






Hi Diane,

The symptoms and weakness have been so bad (palp, skipping, irreg
beat with SOB, crushing adn burning chest pain with SOB, anxiety,
sweats, runs... all the symptoms of a heart attack or angina but when
I've gone to emerg blood tests showed no evidence of having had a
heart attack.
Yet after such episodes I am ssoooo weak, tired, sore and it takes
ages to build up my activity levels again.

I think it is ANS related as you suggest but more than that - also
CFS related my doc thinks - more to do with diastolic
functioning ... ? (which doesn't show on the echo either?)
I don't really expect that they'll find much on the Echo b/c they've
never found anything before (except mitral valve prolapse years ago -
which didn't show up on the most recent test 4 years ago) - except
that I've been more disabled by the symptoms lately.

I'd rather not do the echo if it will make things worse (doc does
leave it up to me thankfully)
and if there were better tests that show the functioning
problems...I' d do that.

I wish I could find a specialist who knows about this (like
Dr.Cheney).. .

If anyone has any good CFS/heart specialist in Ont, please let me
know.

Thanks!

--- In eSens@yahoogroups. com, Evie <evie15422@. ..> wrote:
>
> Hi, Daisy,
>  
> What kind of cardiac problems do you have, Daisy?  There are
cardiac symptoms which go along with ES which are not really cardiac,
as much they are autonomic nervous system/ adrenal related.  These
include rapid heart beat, skipped beats, losing your breath due to
fast heart beat....  When I began having problems (decades ago), I
had EKGs, etc, and nothing organic was found because it ended up
being autonomic nervous system related.  Of course, you should have
tests if you haven't yet, because, for you, it could be heart
related!  But don't be surprised or alarmed if nothing major is found. the
> computer but did a quick search - couldn't find anything re
testing...
>
> Does anyone have any thots on Echocardiograms - any use doing it?
> Will it cause lasting negative effects...?
>
> What about Cardiac Impedance testing? or something like that that
will
> measure diastolic function -which is more likely to be a problem in
CFS.
>
> Does anyone in Southern Ontario have any good experience with
cardiac
> or other specialists who really know and understand our problems?
>
> Dr.Cheney is good but he's too far away - there must be others
around
















     

[Non-text portions of this message have been removed]

Hi, Daisy,
 
This is totally off-topic from ES and I would usually send this type of letter to you off-forum.  However, I see a trend here of women with alot of the same problems lately, and incase these people also would be of similar constitution, I have opted to "bare all" (lol) and write this in open forum. 
 
I am NOT saying this is your problem, only that it may be.  You mention "runs" and I am guessing here that you mean diarrhea.  In 1995, 2 obscure Italian doctors took a dozen of their patients who they had dxed with CFS and put them on a celiac diet.  In 8 months, all but 2, if memory serves, returned to normal health.  The other 2 took much longer, but one of themimproved later, and one remained ill but much improved.  (Later I believe they discovered she also had a fungal or bacterial infection, treated that, and she improved.)  Their study was poo-pooed and ignored by the CFS/allopathic med crowds.  The study got a 3 line paragraph entry in the "TheCFIDS Journal"--the largest CFS publication in the US at the time.  PwCsdidn't want to believe that "just" diet could cause their problems (and didn't want to go gf because, in the words of a friend of mine with CFS, "all the enjoyment I have left is the food I eat".)  Allopathic docs didn't
want to believe CFS was due to diet because they made so much of their living from PwCs and there is no money in a dx that needs only diet to cure it.  You would be quite surprised the number of celiacs who were initially dxed with CFS.  I was one, as well. 
 
Celiacs have increased risk of having ALL SORTS of problems.  Today, I just learned for the first time that 70% of all patients with hypospleenism are celiacs.  I have personally been dxed with well over a dozen other problems which are caused by or secondary to celiac disease--osteoporosis, asthma and COPD, diabetes, anemias, nutritional difficiencies of all sorts, liver cirrhosis, auto-immune tmj, peripheral and other neuropathies, gut dysbiosis, cerebellar damage, ataxia symptoms of all sorts asso with that, adrenal insufficiency, a blood clotting disorder, hypothyroidism....  (And if I later mention I have something else, it is because even I can't remember all my health problems in one sitting!)  I was dxed with mitral valve prolapse during one of my bouts of anemia, as well.  I also had been dxedwith MCS and fibromyalgia but since then have figured out on my own thatFM, for me personally at least, is just another name for lymphatic
congestion.  Allergies and sensitivities aplenty abound in celiacs (and me).  Today, as a result of the diet, I am largely normal, healthwise, (understand this is relative to where I was when dxed--I had been almost entirely bed-bound  for 13 years and ill my entire life prior to dx.)  I have still tremors in my hands and toxins in my body, mcs and es.  I haverecovered entirely from osteoporosis and hypothyroidism (these test now asnormal), my blood sugar is normal by sugarfree, sugar supplement free diet.  I have occasional bouts of fm--usually caused by emfs.
 
Celiac disease was found (by testing the blood bank supply) to be active in1 out of every 133 Americans in 2000 or 2002.  I just read recently thatonly 3% of those Americans have been dxed.  Glutens are now thought to "operate" by damaging the tight junctions of the cells of the mucus membranes in those with celiac disease and gluten intolerance.  It damages the gut, then attaches to tranglutemas (spelling???) and then is easily transported by that to all the cells of the body.  From the blood, it damages the blood-brain barrier tjs.  Researches have found it has a special affinity for certain damage--the bbb, lungs, liver, pancreas.  It also causes up-graded immunity and auto-immunity states, which lead then to all types of auto-immune diseases and sensitivities.  I could write for another 4hours and hit only the tip of the iceberg with the problems researchers now know can be caused by gluten intolerance.  (Celiac disease is a specific
type of gluten intolerance.)  Celiac disease was traditionally thought to be a digestive problem--most docs were trained to see it only in that light.  Researchers now know this is not the case.  Many celiacs are now dxed who have no digestive symptoms.
 
I recovered from CFS nearly entirely--when I have problems, I can deal with them and bring myself back to normal energy.  It took:  extreme avoidance of glutens and going dairyfree for a year (and I ultimately could not tolerate lactose and now have to use lactaid milk, but can eat yogurt, cheese, cream, etc ok).  I also had to treat gut flora problems and address acid metabolism and nutritional deficiencies.  Especially, it took the two supplements pantethine and calcium AEP--when my bp crashes, I have totake these with water every 20 or 30 mins till my bp comes up to normal.  This will avert for me the fatigue which follows and avert most of the other symptoms of CFS.  These also help with most of the autonomic nervous system symptoms but they do not totally abate them.  I then had to go on a controlled exercise regimen to get back my stamina and  improve my energy.  (I have to sign off now so can't write about this, but if anyone wonders
how I did it, just write and ask.)  I also personally found molybdenum and B12 to be key, as well as iron, which I was very deficient in when dxed.  B12 and molybdenum helped my liver detox pathways.  BTW, my liver function tests now test normal, as well.
 
Sooo, you should try to see a GOOD celiac knowledgeable gastroenterologist and be tested.  DO NOT GO GLUTENFREE BEFORE THE TEST.  And if you are gluten intolerant now and gf, do not seek a further dx, but rather go over every item in your diet and your laundry and hygiene products, weeding out all the gluten containing items--even food made on equipment used for gluten products should be avoided.  (Until you have been gf long enough to recover--then you can add back things which might have only minor contamination if you don't react.)  Now you also have to be aware that wall boardsand all sorts of other items can be made with glutens as well.  I reacted to removing wallpaper last summer--the paste was apparently wheat paste--and was ill for a couple months from that.
 
I have to go, but be assured that you can overcome CFS.  There are various subgroups of PwCs, but if you are of the subgroup with serotonin in your urine (the test is the 5-HIAA 24 hr urine test which is very inexpensive as tests go), then you are the same subgroup as me.

Hope this helps and feel free to ask questions by forum, or if not appropriate, privately,
Diane  Oh, ps... you might need to address your electrolytes too.  You mention shortness of breath alot--that responded for me to taking an electrolyte tablet.

--- On Fri, 2/20/09, mcsdaisy <[hidden email]> wrote:

From: mcsdaisy <[hidden email]>
Subject: [eSens] Re: cardiac tests
To: [hidden email]
Date: Friday, February 20, 2009, 6:59 PM






Hi Diane,

The symptoms and weakness have been so bad (palp, skipping, irreg
beat with SOB, crushing adn burning chest pain with SOB, anxiety,
sweats, runs... all the symptoms of a heart attack or angina but when
I've gone to emerg blood tests showed no evidence of having had a
heart attack.
Yet after such episodes I am ssoooo weak, tired, sore and it takes
ages to build up my activity levels again.

I think it is ANS related as you suggest but more than that - also
CFS related my doc thinks - more to do with diastolic
functioning ... ? (which doesn't show on the echo either?)
I don't really expect that they'll find much on the Echo b/c they've
never found anything before (except mitral valve prolapse years ago -
which didn't show up on the most recent test 4 years ago) - except
that I've been more disabled by the symptoms lately.

I'd rather not do the echo if it will make things worse (doc does
leave it up to me thankfully)
and if there were better tests that show the functioning
problems...I' d do that.

I wish I could find a specialist who knows about this (like
Dr.Cheney).. .

If anyone has any good CFS/heart specialist in Ont, please let me
know.

Thanks!

--- In eSens@yahoogroups. com, Evie <evie15422@. ..> wrote:
>
> Hi, Daisy,
>  
> What kind of cardiac problems do you have, Daisy?  There are
cardiac symptoms which go along with ES which are not really cardiac,
as much they are autonomic nervous system/ adrenal related.  These
include rapid heart beat, skipped beats, losing your breath due to
fast heart beat....  When I began having problems (decades ago), I
had EKGs, etc, and nothing organic was found because it ended up
being autonomic nervous system related.  Of course, you should have
tests if you haven't yet, because, for you, it could be heart
related!  But don't be surprised or alarmed if nothing major is found. the
> computer but did a quick search - couldn't find anything re
testing...
>
> Does anyone have any thots on Echocardiograms - any use doing it?
> Will it cause lasting negative effects...?
>
> What about Cardiac Impedance testing? or something like that that
will
> measure diastolic function -which is more likely to be a problem in
CFS.
>
> Does anyone in Southern Ontario have any good experience with
cardiac
> or other specialists who really know and understand our problems?
>
> Dr.Cheney is good but he's too far away - there must be others
around
















     

[Non-text portions of this message have been removed]

> This is totally off-topic from ES and I would usually send this type of
> letter to you off-forum. However, I see a trend here of women with alot
> of the same problems lately

Of course, this is the very type of post that Charles was just complaining
about! Everyone should attempt to stay reasonably on-topic here, otherwise
they will eventually be put into moderation mode and I will have to
review/approve all of their future posts (this is nothing new, I've been
moderating some members posts here for years)

Marc

Hi Diane,

Thanks for your detailed response. I have been tested for celiac
sprue before (blood test ordered by my GP) and by bioenergetic/muscle
testing - always negative.
Also the runs are usually just when the chest pain/tightnes is severe.

Thanks,

~daisy

HI Steph,

Thanks so much - I found the Nightingale site. They're actually in
Ottawa, ON!! Yipee!
I will definitely look into this doctor.
I will need to know if he believes in ES and if every patient has to
go thru all the tests - SPECT scan, nuclear medicine test... dye
injections... I am very leary about those tests in light of my ES and
MCS.

Has anyone had experience with him - gone to see him?

Thanks a bunch!

Hi Marc
 
This is a brilliant post - I for one am extremely grateful for the information you have provided here and I'd say that it is not necessarily off topicfrom ES because if you look at 2 lists one for ES and one for CFS you willfind such a close correlation of symptoms between the two that it almost becomes a "chicken and egg" type situation. There are many who believe that EMFs cause CFS, others ask "does CFS leave someone more vulnerable to ES?",so bear that in mind and what you have posted here is highly relevant. Andpertinent at least for me - only a couple of hours ago I was talking to a friend about this and wondering whether an experiment in going off gluten would make a difference [I think andrew McAfee sugested it in a recent post on this forum] because everything I eat seems to cause digestive discomfortand until your post I had assumed that that eas all that coeliac was - I had no idea that it then led on to all those other problems, but the
more you think about it the more that makes sense. And I know that diane has posted before many times about coeliac disease.
 
We have a saying here in the UK and it is "I take my hat off to you" for what you have managed to overcome. It gives me great hope.
 
Many thanks
 
Steph 
 


--- On Sat, 21/2/09, Evie <[hidden email]> wrote:

From: Evie <[hidden email]>
Subject: Re: [eSens] Re: cardiac tests
To: [hidden email]
Date: Saturday, 21 February, 2009, 5:04 PM






Hi, Daisy,
 
This is totally off-topic from ES and I would usually send this type of letter to you off-forum.  However, I see a trend here of women with alot of the same problems lately, and incase these people also would be of similar constitution, I have opted to "bare all" (lol) and write this in open forum. 
 
I am NOT saying this is your problem, only that it may be.  You mention "runs" and I am guessing here that you mean diarrhea.  In 1995, 2 obscure Italian doctors took a dozen of their patients who they had dxed withCFS and put them on a celiac diet.  In 8 months, all but 2, if memoryserves, returned to normal health.  The other 2 took much longer, butone of them improved later, and one remained ill but much improved.  (Later I believe they discovered she also had a fungal or bacterial infection, treated that, and she improved.)  Their study was poo-pooed and ignored by the CFS/allopathic med crowds.  The study got a 3 line paragraph entry in the "The CFIDS Journal"--the largest CFS publication in the USat the time.  PwCs didn't want to believe that "just" diet could cause their problems (and didn't want to go gf because, in the words of a friend of mine with CFS, "all the enjoyment I have left is the food I eat".)  Allopathic docs didn't
want to believe CFS was due to diet because they made so much of theirliving from PwCs and there is no money in a dx that needs only diet to cure it.  You would be quite surprised the number of celiacs who were initially dxed with CFS.  I was one, as well. 
 
Celiacs have increased risk of having ALL SORTS of problems.  Today, Ijust learned for the first time that 70% of all patients with hypospleenism are celiacs.  I have personally been dxed with well over a dozen other problems which are caused by or secondary to celiac disease--osteoporos is, asthma and COPD, diabetes, anemias, nutritional difficiencies of all sorts, liver cirrhosis, auto-immune tmj, peripheral and other neuropathies, gut dysbiosis, cerebellar damage, ataxia symptoms of all sorts asso with that, adrenal insufficiency, a blood clotting disorder, hypothyroidism. ....  (And if I later mention I have something else, it is because evenI can't remember all my health problems in one sitting!)  I was dxed with mitral valve prolapse during one of my bouts of anemia, as well. I also had been dxed with MCS and fibromyalgia  but since then have figured out on my own that FM, for me personally at least, is just another name for lymphatic
congestion.  Allergies and sensitivities aplenty abound in celiacs (and me).  Today, as a result of the diet, I am largely normal, healthwise, (understand this is relative to where I was when dxed--I had been almost entirely bed-bound  for 13 years and ill my entire life prior todx.)  I have still tremors in my hands and toxins in my body, mcs andes.  I have recovered entirely from osteoporosis and hypothyroidism (these test now as normal), my blood sugar is normal by sugarfree, sugar supplement free diet.  I have occasional bouts of fm--usually caused by emfs.
 
Celiac disease was found (by testing the blood bank supply) to be active in1 out of every 133 Americans in 2000 or 2002.  I just read recently that only 3% of those Americans have been dxed.  Glutens are now thought to "operate" by damaging the tight junctions of the cells of the mucus membranes in those with celiac disease and gluten intolerance.  It damages the gut, then attaches to tranglutemas (spelling??? ) and then is easily transported by that to all the cells of the body.  From the blood, it damages the blood-brain barrier tjs.  Researches have found it has a special affinity for certain damage--the bbb, lungs, liver, pancreas.  It also causes up-graded immunity and auto-immunity states,which lead then to all types of auto-immune diseases and sensitivities.  I could write for another 4 hours and hit only the tip of the iceberg with the problems researchers now know can be caused by gluten intolerance.  (Celiac disease is a specific
type of gluten intolerance. )  Celiac disease was traditionally thought to be a digestive problem--most docs were trained to see it only in that light.  Researchers now know this is not the case.  Many celiacs are now dxed who have no digestive symptoms.
 
I recovered from CFS nearly entirely--when I have problems, I can dealwith them and bring myself back to normal energy.  It took:  extreme avoidance of glutens and going dairyfree for a year (and I ultimately could not tolerate lactose and now have to use lactaid milk, but can eat yogurt, cheese, cream, etc ok).  I also had to treat gut floraproblems and address acid metabolism and nutritional deficiencies.  Especially, it took the two supplements pantethine and calcium AEP--when my bp crashes, I have to take these with water every 20 or 30 mins till my bp comes up to normal.  This will avert for me the fatigue which follows and avert most of the other symptoms of CFS.  These also help with most of the autonomic nervous system symptoms but they do not totally abate them.  I then had to go on a controlled exercise regimen to get back my stamina and  improve my energy.  (I have to sign off now so can'twrite about this, but if anyone wonders
how I did it, just write and ask.)  I also personally found molybdenumand B12 to be key, as well as iron, which I was very deficient in when dxed.  B12 and molybdenum helped my liver detox pathways.  BTW, my liver function tests now test normal, as well.
 
Sooo, you should try to see a GOOD celiac knowledgeable gastroenterologist and be tested.  DO NOT GO GLUTENFREE BEFORE THE TEST.  And if youare gluten intolerant now and gf, do not seek a further dx, but rather go over every item in your diet and your laundry and hygiene products, weeding out all the gluten containing items--even food made on equipmentused for gluten products should be avoided.  (Until you have been gf long enough to recover--then you can add back things which might have only minor contamination if you don't react.)  Now you also have to be aware that wall boards and all sorts of other items can be made with glutens as well.  I reacted to removing wallpaper last summer--the paste was apparently wheat paste--and was ill for a couple months from that.
 
I have to go, but be assured that you can overcome CFS.  There are various subgroups of PwCs, but if you are of the subgroup with serotonin in your urine (the test is the 5-HIAA 24 hr urine test which is very inexpensive as tests go), then you are the same subgroup as me.

Hope this helps and feel free to ask questions by forum, or if not appropriate, privately,
Diane  Oh, ps... you might need to address your electrolytes too.  You mention shortness of breath alot--that responded for me to taking an electrolyte tablet.

--- On Fri, 2/20/09, mcsdaisy <mcsdaisy@yahoo. ca> wrote:

From: mcsdaisy <mcsdaisy@yahoo. ca>
Subject: [eSens] Re: cardiac tests
To: eSens@yahoogroups. com
Date: Friday, February 20, 2009, 6:59 PM

Hi Diane,

The symptoms and weakness have been so bad (palp, skipping, irreg
beat with SOB, crushing adn burning chest pain with SOB, anxiety,
sweats, runs... all the symptoms of a heart attack or angina but when
I've gone to emerg blood tests showed no evidence of having had a
heart attack.
Yet after such episodes I am ssoooo weak, tired, sore and it takes
ages to build up my activity levels again.

I think it is ANS related as you suggest but more than that - also
CFS related my doc thinks - more to do with diastolic
functioning ... ? (which doesn't show on the echo either?)
I don't really expect that they'll find much on the Echo b/c they've
never found anything before (except mitral valve prolapse years ago -
which didn't show up on the most recent test 4 years ago) - except
that I've been more disabled by the symptoms lately.

I'd rather not do the echo if it will make things worse (doc does
leave it up to me thankfully)
and if there were better tests that show the functioning
problems...I' d do that.

I wish I could find a specialist who knows about this (like
Dr.Cheney).. .

If anyone has any good CFS/heart specialist in Ont, please let me
know.

Thanks!

--- In eSens@yahoogroups. com, Evie <evie15422@. ..> wrote:
>
> Hi, Daisy,
>  
> What kind of cardiac problems do you have, Daisy?  There are
cardiac symptoms which go along with ES which are not really cardiac,
as much they are autonomic nervous system/ adrenal related.  These
include rapid heart beat, skipped beats, losing your breath due to
fast heart beat....  When I began having problems (decades ago), I
had EKGs, etc, and nothing organic was found because it ended up
being autonomic nervous system related.  Of course, you should have
tests if you haven't yet, because, for you, it could be heart
related!  But don't be surprised or alarmed if nothing major is found. the
> computer but did a quick search - couldn't find anything re
testing...
>
> Does anyone have any thots on Echocardiograms - any use doing it?
> Will it cause lasting negative effects...?
>
> What about Cardiac Impedance testing? or something like that that
will
> measure diastolic function -which is more likely to be a problem in
CFS.
>
> Does anyone in Southern Ontario have any good experience with
cardiac
> or other specialists who really know and understand our problems?
>
> Dr.Cheney is good but he's too far away - there must be others
around
[Non-text portions of this message have been removed]

















     

[Non-text portions of this message have been removed]

Hi Daisy
 
That is amazing - as I said in my post his focus is primarily ME/CFS, but I'd imagine he wouldn't turn away someone with ES - the symptoms are very similar but then pathology could be very different. In the presentation I sawhe described the battery of tests he would go through and I think he said it would take about a week or 2 weeks to complete them. From what I know, he goes into great depth, and something he said really stayed with me because he said that the tests would show what was malfunctioning with a person, and that even if it couldn't be treated at that time [perhaps because the technology or the appropriate medical intervention didn't exist] then when in time treatment became available something could be done about it then. Let me know how you go.
 
Regards
 
Steph

--- On Sat, 21/2/09, mcsdaisy <[hidden email]> wrote:

From: mcsdaisy <[hidden email]>
Subject: [eSens] Re: cardiac tests
To: [hidden email]
Date: Saturday, 21 February, 2009, 6:04 PM






HI Steph,

Thanks so much - I found the Nightingale site. They're actually in
Ottawa, ON!! Yipee!
I will definitely look into this doctor.
I will need to know if he believes in ES and if every patient has to
go thru all the tests - SPECT scan, nuclear medicine test... dye
injections.. . I am very leary about those tests in light of my ES and
MCS.

Has anyone had experience with him - gone to see him?

Thanks a bunch!

















     

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Hi, Marc,
 
I try to stay on-topic and usually do send this type of post privately.  I have been concerned as to the number of women lately who come here, all with similar problems and that was my only reason for writing openly.  Is there a way we can occasionally split off from this forum, to have group discussions on particular issues???  I am not aware of a forum which does this, but in this forum I see this problem arises more frequently.  Also, you will see in my post a couple paragraphs from the end of the post, IDID tie this to autonomic nervous system dysfunction, and in doing so, I meant to (tho did not specifically say so because I was in a hurry) imply there was a connection to our ES symptoms.  So, tho most of the post was seemingly off-topic, it was not actually completely off-topic.  There are reasons why women with the same type problems keep showing up here.
 
I am truly sorry for seeming off-topic, but I am trying to bring some lightto some issues which others are not addressing (the reasons why so many women come here with similar issues).  Until people begin to understand howthese issues are connected, they will not be able to work toward a suitable solution to ES.  And, yes, I understand that this is not the only issuewe should be addressing--that is why it would be so good if we could occasionally have sub-group side discussions, if this is even possible.
 
Sorry, Marc;  I thought you did always monitor me <smile> 
Diane

--- On Sat, 2/21/09, Marc Martin <[hidden email]> wrote:

From: Marc Martin <[hidden email]>
Subject: Re: [eSens] Re: cardiac tests
To: [hidden email]
Date: Saturday, February 21, 2009, 12:44 PM






> This is totally off-topic from ES and I would usually send this type of
> letter to you off-forum. However, I see a trend here of women with alot
> of the same problems lately

Of course, this is the very type of post that Charles was just complaining
about! Everyone should attempt to stay reasonably on-topic here, otherwise
they will eventually be put into moderation mode and I will have to
review/approve all of their future posts (this is nothing new, I've been
moderating some members posts here for years)

Marc
















     

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Hi, Daisy,
 
I forgot about Byron Hyde!  Yes, I too, recommend him.  I was in touch with him over a decade ago.  Well respected cfs doc back then.  I got his info I believe from the CFIDS Journal at the time.  Good luck, Ihope it works out for you.
 
Diane 

--- On Sat, 2/21/09, Stephanie Smith <[hidden email]> wrote:

From: Stephanie Smith <[hidden email]>
Subject: Re: [eSens] Re: cardiac tests
To: [hidden email]
Date: Saturday, February 21, 2009, 10:50 AM






Hi Daisy
 
I don't know of anyone in Ontario but there is an amazing guy called Dr Byron Hyde who does have a clinic somewhere in Canada - he will run a whole battery of tests [tests that other docs wouldn't even think of running because they might be outside the box - not in a harmful way but he thinks very imaginatively if you know what I mean] He has a website called the Nightingale Foundation [based in California I think] which you can look up on google.. I know of him through CFS, and have read some of his stuff and seen a few of his presentations on video. Check him out - he's costly but he is one of the good guys.
 
Best wishes
 
Steph

--- On Fri, 20/2/09, mcsdaisy <mcsdaisy@yahoo. ca> wrote:

From: mcsdaisy <mcsdaisy@yahoo. ca>
Subject: [eSens] Re: cardiac tests
To: eSens@yahoogroups. com
Date: Friday, 20 February, 2009, 11:59 PM

Hi Diane,

The symptoms and weakness have been so bad (palp, skipping, irreg
beat with SOB, crushing adn burning chest pain with SOB, anxiety,
sweats, runs... all the symptoms of a heart attack or angina but when
I've gone to emerg blood tests showed no evidence of having had a
heart attack.
Yet after such episodes I am ssoooo weak, tired, sore and it takes
ages to build up my activity levels again.

I think it is ANS related as you suggest but more than that - also
CFS related my doc thinks - more to do with diastolic
functioning ... ? (which doesn't show on the echo either?)
I don't really expect that they'll find much on the Echo b/c they've
never found anything before (except mitral valve prolapse years ago -
which didn't show up on the most recent test 4 years ago) - except
that I've been more disabled by the symptoms lately.

I'd rather not do the echo if it will make things worse (doc does
leave it up to me thankfully)
and if there were better tests that show the functioning
problems...I' d do that.

I wish I could find a specialist who knows about this (like
Dr.Cheney).. .

If anyone has any good CFS/heart specialist in Ont, please let me
know.

Thanks!

--- In eSens@yahoogroups. com, Evie <evie15422@. ..> wrote:
>
> Hi, Daisy,
>  
> What kind of cardiac problems do you have, Daisy?  There are
cardiac symptoms which go along with ES which are not really cardiac,
as much they are autonomic nervous system/ adrenal related.  These
include rapid heart beat, skipped beats, losing your breath due to
fast heart beat....  When I began having problems (decades ago), I
had EKGs, etc, and nothing organic was found because it ended up
being autonomic nervous system related.  Of course, you should have
tests if you haven't yet, because, for you, it could be heart
related!  But don't be surprised or alarmed if nothing major is found. the
> computer but did a quick search - couldn't find anything re
testing...
>
> Does anyone have any thots on Echocardiograms - any use doing it?
> Will it cause lasting negative effects...?
>
> What about Cardiac Impedance testing? or something like that that
will
> measure diastolic function -which is more likely to be a problem in
CFS.
>
> Does anyone in Southern Ontario have any good experience with
cardiac
> or other specialists who really know and understand our problems?
>
> Dr.Cheney is good but he's too far away - there must be others
around
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